Bubsmomalso
02-22-2005, 02:28 AM
As I said, can anyone help me to help my son and my family? My son is eight and has a big list of diagnosis. He started out with a diagnosis of bipolar and adhd. Now the list is as follows: Oppositional Defiant Disorder, Victim of Physical and Sexual Abuse, Attention-Deficit/Hyperactivity Disorder(combined type), Encopresis, Enuresis, Depression, N.O.S., History of Post-Traumatic Stress Disorder. They say he has borderline intellectual functioning, problems with social support and education.
He has been on numerous meds, all of which don't really seem like they're working to me. Too many meds for me to even remember off the top of my head. Here are a few; Zyprexa, Neurontin, Risperdal, Seroquel, Zoloft, Paxil, Depakote, Triliptal, and Remeron. I know there are many many more, but can't think of them at the moment.
Right now he is on: Strattera 54 mg, clonidine 0.1 mg, Wellbutrin-sr 150 mg and 10 mg of Abilify at breakfast time
At lunch 0.1 mg of clonidine
At bedtime 0.1 mg clonidine, 0.4 mg of DDAVP, and 10 mg of Abilify
He also has 1 mg quick dissolve tabs of risperdal for extreme aggitation, but we hardly ever give him those since they don't do much to calm him down anyway.
The poor kid was an inpatient at the state hospital in the children's ward for a little over a year and still no better. He came home on the weekends and school holidays every time. We NEVER avoided going to get him so he could have his home visits.
The hospital's prognosis says word for word the following:
"His prognosis is poor. Even towards the end of the hospitalization, he still had severe struggles with impulsivity. He was very easily provoked by peers. No medication combonations have ever been found that adequately manage his many symptoms. He is very impulsive and has borderline intellectual functioning, so it is difficult for him to grasp new skills. On the plus side, he has a very committed mother who is willing to work hard to make changes in her life to help him. It is my fear that he may ultimately require long term residential treatment and may not be able to live at home in the community. I fear that he may need future long term residential placement."
Now, my husband and I did not just bring him home for good and just not do anything else for him. My son goes to individual and group therapy. He has med clinics once a month. He also has a case manager that comes to my house at least twice a week, every week to spend time with him.
All of this and the time at the hospital, not to mention the few week or two at a time stays at psychiatric inpatient units and still NO better. What else can we do? Our lives are hectic and frazzled at all times. My son throws things, is destructive, angry, depressed, loud, and violent every day.
So, please Anyone who has any advice at all please let me know. We LOVE our son and only wish for him to be happy, cared for, and safe. We do not want to see him institutionalized for the rest of his life. We are willing to do anything it takes to make things better for him and hopefully us as well.
Thank you in advance for any insight you might have.
Bubsmom
He has been on numerous meds, all of which don't really seem like they're working to me. Too many meds for me to even remember off the top of my head. Here are a few; Zyprexa, Neurontin, Risperdal, Seroquel, Zoloft, Paxil, Depakote, Triliptal, and Remeron. I know there are many many more, but can't think of them at the moment.
Right now he is on: Strattera 54 mg, clonidine 0.1 mg, Wellbutrin-sr 150 mg and 10 mg of Abilify at breakfast time
At lunch 0.1 mg of clonidine
At bedtime 0.1 mg clonidine, 0.4 mg of DDAVP, and 10 mg of Abilify
He also has 1 mg quick dissolve tabs of risperdal for extreme aggitation, but we hardly ever give him those since they don't do much to calm him down anyway.
The poor kid was an inpatient at the state hospital in the children's ward for a little over a year and still no better. He came home on the weekends and school holidays every time. We NEVER avoided going to get him so he could have his home visits.
The hospital's prognosis says word for word the following:
"His prognosis is poor. Even towards the end of the hospitalization, he still had severe struggles with impulsivity. He was very easily provoked by peers. No medication combonations have ever been found that adequately manage his many symptoms. He is very impulsive and has borderline intellectual functioning, so it is difficult for him to grasp new skills. On the plus side, he has a very committed mother who is willing to work hard to make changes in her life to help him. It is my fear that he may ultimately require long term residential treatment and may not be able to live at home in the community. I fear that he may need future long term residential placement."
Now, my husband and I did not just bring him home for good and just not do anything else for him. My son goes to individual and group therapy. He has med clinics once a month. He also has a case manager that comes to my house at least twice a week, every week to spend time with him.
All of this and the time at the hospital, not to mention the few week or two at a time stays at psychiatric inpatient units and still NO better. What else can we do? Our lives are hectic and frazzled at all times. My son throws things, is destructive, angry, depressed, loud, and violent every day.
So, please Anyone who has any advice at all please let me know. We LOVE our son and only wish for him to be happy, cared for, and safe. We do not want to see him institutionalized for the rest of his life. We are willing to do anything it takes to make things better for him and hopefully us as well.
Thank you in advance for any insight you might have.
Bubsmom
Sponsor
kiehn
02-22-2005, 09:33 AM
Im so sorry to hear your son has so many problems. It almost unbelieveable, but
yet I believe you. Ive heard some people are med resisitant and I've often wondered
if it's because their body lacks certain nutrients. Im 48yrs old bipolar with pyschosis
and have been on many of the antipychotic meds without success. So I have turned
to the internet and started doing my own research and found many people with
mental illness are lacking certain nutrients such as the amino acids, choline, inositol etc however many of these nutrients were administered at high doses that required being monitored in a hospital setting with improved success. The point Im trying to make is have you considered a natural pathic doctor in your area at least as a starting reference point, what do you have to loose. I wish you and your son success. K
yet I believe you. Ive heard some people are med resisitant and I've often wondered
if it's because their body lacks certain nutrients. Im 48yrs old bipolar with pyschosis
and have been on many of the antipychotic meds without success. So I have turned
to the internet and started doing my own research and found many people with
mental illness are lacking certain nutrients such as the amino acids, choline, inositol etc however many of these nutrients were administered at high doses that required being monitored in a hospital setting with improved success. The point Im trying to make is have you considered a natural pathic doctor in your area at least as a starting reference point, what do you have to loose. I wish you and your son success. K
Ruth6:11
02-22-2005, 09:58 AM
I was diagnosed with Bipolar Disorder 20 yrs ago. First symptoms at age 13, not diagnosed until I was 30...
Oddly enough, my point of view does not come from having a mental illness myself, but from having my father die of colon cancer four years ago.
When we first got the diagnosis we all prayed for a cure - for something that would make this Stage IV cancer disappear. He did chemo, radiation, clinical trials.
Over time our prayers - to keep him with us - slowly changed.
We found ourselves praying that he would feel no pain. That he would be at peace.
One of those two prayers were answered - and we were truly greatful even tho I would give anything to have another hug from him.
If your son's condition is as you describe, and if his doctor's have explored all the avenues, perhaps the answer to your wish ("We are willing to do anything it takes to make things better for him and hopefully us as well.") may well BE residential care.
Probably less stressful for him, and you would be a more rested and loving family when you visit or have him home for weekends occasionally.
You're thinking you would be a "bad mother" if you "gave up" on your son, right?
I am not a bad daughter, and I did not give up on my Dad - Cancer that has spread from colon to liver to bone to lung to brain doesn't CARE how "good a daughter" I am. Neither does severe (and I do mean Severe as in your son's case) Mental Illness.
Explore possibilities, get 2nd opinions - but a decision to put your son into residential care has NOTHING to do with how "good a job" you are doing. Maybe what's best for him IS this change?
Hang in there. Sometimes loving someone means doing the things that are Best for them even though they are not things we would choose if there were any other options.
Ruth
:angel:
Oddly enough, my point of view does not come from having a mental illness myself, but from having my father die of colon cancer four years ago.
When we first got the diagnosis we all prayed for a cure - for something that would make this Stage IV cancer disappear. He did chemo, radiation, clinical trials.
Over time our prayers - to keep him with us - slowly changed.
We found ourselves praying that he would feel no pain. That he would be at peace.
One of those two prayers were answered - and we were truly greatful even tho I would give anything to have another hug from him.
If your son's condition is as you describe, and if his doctor's have explored all the avenues, perhaps the answer to your wish ("We are willing to do anything it takes to make things better for him and hopefully us as well.") may well BE residential care.
Probably less stressful for him, and you would be a more rested and loving family when you visit or have him home for weekends occasionally.
You're thinking you would be a "bad mother" if you "gave up" on your son, right?
I am not a bad daughter, and I did not give up on my Dad - Cancer that has spread from colon to liver to bone to lung to brain doesn't CARE how "good a daughter" I am. Neither does severe (and I do mean Severe as in your son's case) Mental Illness.
Explore possibilities, get 2nd opinions - but a decision to put your son into residential care has NOTHING to do with how "good a job" you are doing. Maybe what's best for him IS this change?
Hang in there. Sometimes loving someone means doing the things that are Best for them even though they are not things we would choose if there were any other options.
Ruth
:angel:
Bubsmomalso
02-22-2005, 11:56 PM
K- Thank you for your reply. I am sorry that it took so long for you to get a diagnosis. Also, thank you for the idea of that kind of doctor. We have tried everything else so I guess that could be my next step. Wish us luck.
Ruth- Thank you for your reply also. My son was already in a residential treatment facility for over a year. It was very stressful on him and us. He was depressed and would not eat hardly at all. He lost about 25 pounds while there. He behaved no better or worse while there. It was a rule that they call me anytime he had major incidences or had to be put in a hold. They called as few as three times a week. He constantly cried for me and my husband and his sister while there.
I'm not trying to toss your idea aside, I just don't see what good could possibly come from him being in one of those places again. I didn't feel as if I were a bad mother. I have done everything any doctor, therapist, case manager, or anyone has ever suggested. I felt I did what was best for his well being, as well as ours. They did no better than my husband and I do. They gave us no answers at all. They only were surprised that we were able to deal with him every day the way that we do.
I'm also not saying that I wouldn't admit him to another facility if that is what is best. I'm just looking for anyone's ideas that I haven't tried to see if maybe that might work. I'm willing to try anything.
Thanks for the advice and sympathy so far. Any more advice or ideas would be much appreciated.
Ruth- Thank you for your reply also. My son was already in a residential treatment facility for over a year. It was very stressful on him and us. He was depressed and would not eat hardly at all. He lost about 25 pounds while there. He behaved no better or worse while there. It was a rule that they call me anytime he had major incidences or had to be put in a hold. They called as few as three times a week. He constantly cried for me and my husband and his sister while there.
I'm not trying to toss your idea aside, I just don't see what good could possibly come from him being in one of those places again. I didn't feel as if I were a bad mother. I have done everything any doctor, therapist, case manager, or anyone has ever suggested. I felt I did what was best for his well being, as well as ours. They did no better than my husband and I do. They gave us no answers at all. They only were surprised that we were able to deal with him every day the way that we do.
I'm also not saying that I wouldn't admit him to another facility if that is what is best. I'm just looking for anyone's ideas that I haven't tried to see if maybe that might work. I'm willing to try anything.
Thanks for the advice and sympathy so far. Any more advice or ideas would be much appreciated.
kerry1
02-23-2005, 01:55 AM
Man, I'm so sorry to hear that. It sounds like you've tried your hardest. But it could well be that he needs to be in residential care. It's not necessarily your failure or that of the hospital's. It's just a very sad fact.
I've heard too many stories about kids in care who were diagnosed untreatable, but kind-hearted people adopted them and tried to help them. The endings to these stories were tragic and violent. Too many sleepless nights, plus trying to move forward and only slipping backward, can cause the strongest parent to snap. Trying to raise your other kids, hold down a job, keep a marriage together, and constantly scrubbing feces, vomit and blood off the walls, carpet and floor because your able-bodied child dirties and injures himself on purpose? I don't think Mother Theresa could handle that.
Why could a hospital do better? Hopefully because they have rotating staff, all well rested. They trained to do this kind of work because they get some satisfaction from it. They're able to maintain a certain level of sanity.
The blame lies with the person(s) who violated him in the first place. Sometimes the damage can be reversed, and the kid can live a reasonably normal life. Sometimes the poor kid cannot respond to the best care available.
Please be realistic about your son when you make this decision. You can only do what you can do. God bless you.
I've heard too many stories about kids in care who were diagnosed untreatable, but kind-hearted people adopted them and tried to help them. The endings to these stories were tragic and violent. Too many sleepless nights, plus trying to move forward and only slipping backward, can cause the strongest parent to snap. Trying to raise your other kids, hold down a job, keep a marriage together, and constantly scrubbing feces, vomit and blood off the walls, carpet and floor because your able-bodied child dirties and injures himself on purpose? I don't think Mother Theresa could handle that.
Why could a hospital do better? Hopefully because they have rotating staff, all well rested. They trained to do this kind of work because they get some satisfaction from it. They're able to maintain a certain level of sanity.
The blame lies with the person(s) who violated him in the first place. Sometimes the damage can be reversed, and the kid can live a reasonably normal life. Sometimes the poor kid cannot respond to the best care available.
Please be realistic about your son when you make this decision. You can only do what you can do. God bless you.
Bubsmomalso
02-23-2005, 03:29 AM
Kerry1, Thanks for taking time to reply to my post. Also thanks to all for the supportive and concerned replies. It really helps me to just get out my frustrations to people who don't really know us sometimes. I keep it inside a lot of the time since I figure the people who do know us get tired of hearing about it. I would have to say that one of the most irritating things about all of this is that even though child protective services has substainted the abuse and molestation the prosecutor said they do not feel they have enough to press charges at this time.
My son's whole life has changed since this terrible thing happened to him, in fact because of his behavior all of our whole lives have changed for the worse, and the prosecutor does NOTHING. It just makes me so mad.
I'm pretty sleepy now so I'm going to bed. It's 2:30 am here. Hope you all have a good night.
My son's whole life has changed since this terrible thing happened to him, in fact because of his behavior all of our whole lives have changed for the worse, and the prosecutor does NOTHING. It just makes me so mad.
I'm pretty sleepy now so I'm going to bed. It's 2:30 am here. Hope you all have a good night.
bbybyrd
02-23-2005, 03:21 PM
I feel so sorry for you and especially your son. To be that young and to have already been on so many meds. I know how you feel though about all the diagnoses. I'm currently diagnosed with 5 different things. I really don't have any advice...just wanted to let you know that you and your family are in my prayers. :nono:
kerry1
02-23-2005, 08:32 PM
Unfortunately that's the case with child abusers a lot of the time - the child isn't in any shape to testify, or is confused about what happened. He might name someone totally different as his abuser, because he's scared to name the real abuser. I'm really sorry.
GettingWellAgain
02-24-2005, 12:19 AM
I'm sorry to hear about your son. I can't even imagine how hard this is for you. I think someone on this thread mentioned nutritional deficiencies, and how they are related to Mental Illness, and I just want to say how true that is. Seeing that your son is heavily medicated, I'm sure you cannot just take him off of the medication to experiment with nutraceuticals, but I think it's always a good idea to make sure everything is 100% okay physically before you can work on the mental issues. Your son WAS in a hospital, where I'm sure they did routine testing, but it can never hurt to get your son's levels of vitamins and minerals checked. Something as simple as lacking in B Vitamins can greatly contribute to agitation. Diet also plays SUCH a major role in Mental Illness, and any kind of illness in general. I never put much weight into simple things like diet and nutrition until I became ill myself. I am gluten intolerant (yet to be officially diagnosed Celiac) and eating gluten, which is in almost EVERYTHING we Americans eat, caused me extreme moods swings to the point of psychosis, depression, severe anxiety, and agitation. I couldn't believe how "sane" I was when I stopped eating the gluten-containing foods. Before all of this, I also had a history of mental illness. I was diagnosed at the age of 13 with Panic Disorder with Agoraphobia, and then depression, and then Obsessive-Compulsive Disorder, and also Cyclothymia. Now, I rarely have Panic Attacks, am not at all agoraphobic, and only have a mild level of generalized anxiety and mood swings. My OCD also disappeared when I quit the gluten. It was absolutely amazing. I was also on every one of the medications that your son is/was on, plus more. I am not saying that diet is definitely the magic bullet for your son, as there are many people who do not improve with diet or improve at all, but I'm just suggesting that you could give this angle a quick look, as it just might be worth it. Is your son constantly or quickly switching medications? Many of those medications, if not most, have "withdrawal symptoms" even though they aren't physically addictive. If you're constantly changing meds, that can have a profound affect on his behavior and moods because his brain chemicals are all messed up and confused. Also, is it possible that some of the medicine is a contributing or causative factor of his problematic and erratic behavior and moods? I know I personally reacted horribly to many of the meds that I was taking, and know many other people that have, too. Is your son completely unable to function without medication or is it too risky for him to be off of it? I'm just curious because even after being off of medication, it takes months for the brain chemicals to normalize again, and before a person feels "normal" again. I wish you the best of luck,
Katalina
Katalina
sweetsourcat
02-24-2005, 03:15 PM
i have also seen some evidence of this. read up on magnesium. it may help you. it cannot hurt.
Jennita
02-24-2005, 03:49 PM
As I said, can anyone help me to help my son and my family? My son is eight and has a big list of diagnosis. He started out with a diagnosis of bipolar and adhd. Now the list is as follows: Oppositional Defiant Disorder, Victim of Physical and Sexual Abuse, Attention-Deficit/Hyperactivity Disorder(combined type), Encopresis, Enuresis, Depression, N.O.S., History of Post-Traumatic Stress Disorder. They say he has borderline intellectual functioning, problems with social support and education.
He has been on numerous meds, all of which don't really seem like they're working to me. Too many meds for me to even remember off the top of my head. Here are a few; Zyprexa, Neurontin, Risperdal, Seroquel, Zoloft, Paxil, Depakote, Triliptal, and Remeron. I know there are many many more, but can't think of them at the moment.
Right now he is on: Strattera 54 mg, clonidine 0.1 mg, Wellbutrin-sr 150 mg and 10 mg of Abilify at breakfast time
At lunch 0.1 mg of clonidine
At bedtime 0.1 mg clonidine, 0.4 mg of DDAVP, and 10 mg of Abilify
He also has 1 mg quick dissolve tabs of risperdal for extreme aggitation, but we hardly ever give him those since they don't do much to calm him down anyway.
The poor kid was an inpatient at the state hospital in the children's ward for a little over a year and still no better. He came home on the weekends and school holidays every time. We NEVER avoided going to get him so he could have his home visits.
The hospital's prognosis says word for word the following:
"His prognosis is poor. Even towards the end of the hospitalization, he still had severe struggles with impulsivity. He was very easily provoked by peers. No medication combonations have ever been found that adequately manage his many symptoms. He is very impulsive and has borderline intellectual functioning, so it is difficult for him to grasp new skills. On the plus side, he has a very committed mother who is willing to work hard to make changes in her life to help him. It is my fear that he may ultimately require long term residential treatment and may not be able to live at home in the community. I fear that he may need future long term residential placement."
Now, my husband and I did not just bring him home for good and just not do anything else for him. My son goes to individual and group therapy. He has med clinics once a month. He also has a case manager that comes to my house at least twice a week, every week to spend time with him.
All of this and the time at the hospital, not to mention the few week or two at a time stays at psychiatric inpatient units and still NO better. What else can we do? Our lives are hectic and frazzled at all times. My son throws things, is destructive, angry, depressed, loud, and violent every day.
So, please Anyone who has any advice at all please let me know. We LOVE our son and only wish for him to be happy, cared for, and safe. We do not want to see him institutionalized for the rest of his life. We are willing to do anything it takes to make things better for him and hopefully us as well.
Thank you in advance for any insight you might have.
Bubsmom
That's so sad. Look, I'm no doctor, but it sounds like the med route isn't helping. If he is bi-polar, why are they giving him two AD's that can cause manic reactions? Wellbutrin and Strattera are both norepinphrine re-uptake inhibitors, norepinphrine is basically adrenaline. Wellbutrin also inhibits re-uptake of dopamine, dopamine is an intermediate to adrenaline. So no wonder he's a bit jacked up, and needs clonodine or risperdal to settle him down...which you say doesn't work so good anyway.
Since you've tried all meds possible and he is just getting worse, do you think another avenue might work? I don't know how many alternative medicine doctors there are who can treat this stuff, but I'd investigate it some, there is supposed to be a very good center in Chicago , I can't remember the name exactly, but they use supplements and amino acid therapy.
I read that Margo Kidder, the actress with bi-polar uses amino acid therapy and claims it worked much better than medication.
I'm not saying to yank him off all his meds, in fact, you can't it would be very dangerous.
Those types of meds must be slowly weaned off with medical supervision. Maybe you could find some second opinions or alternative doctors out there? Only things I've heard of that help brain problems are fish oil, amino acids, magnesium, and B-vitamins. I read B-vitamins can really make a difference in schizophrenia, liquid versions and injected are more absorbed than pills.
Good luck, I don't have any concrete answers but hopefully you can find something better than what is being done now for your son.....keep looking intil you find it... :angel:
He has been on numerous meds, all of which don't really seem like they're working to me. Too many meds for me to even remember off the top of my head. Here are a few; Zyprexa, Neurontin, Risperdal, Seroquel, Zoloft, Paxil, Depakote, Triliptal, and Remeron. I know there are many many more, but can't think of them at the moment.
Right now he is on: Strattera 54 mg, clonidine 0.1 mg, Wellbutrin-sr 150 mg and 10 mg of Abilify at breakfast time
At lunch 0.1 mg of clonidine
At bedtime 0.1 mg clonidine, 0.4 mg of DDAVP, and 10 mg of Abilify
He also has 1 mg quick dissolve tabs of risperdal for extreme aggitation, but we hardly ever give him those since they don't do much to calm him down anyway.
The poor kid was an inpatient at the state hospital in the children's ward for a little over a year and still no better. He came home on the weekends and school holidays every time. We NEVER avoided going to get him so he could have his home visits.
The hospital's prognosis says word for word the following:
"His prognosis is poor. Even towards the end of the hospitalization, he still had severe struggles with impulsivity. He was very easily provoked by peers. No medication combonations have ever been found that adequately manage his many symptoms. He is very impulsive and has borderline intellectual functioning, so it is difficult for him to grasp new skills. On the plus side, he has a very committed mother who is willing to work hard to make changes in her life to help him. It is my fear that he may ultimately require long term residential treatment and may not be able to live at home in the community. I fear that he may need future long term residential placement."
Now, my husband and I did not just bring him home for good and just not do anything else for him. My son goes to individual and group therapy. He has med clinics once a month. He also has a case manager that comes to my house at least twice a week, every week to spend time with him.
All of this and the time at the hospital, not to mention the few week or two at a time stays at psychiatric inpatient units and still NO better. What else can we do? Our lives are hectic and frazzled at all times. My son throws things, is destructive, angry, depressed, loud, and violent every day.
So, please Anyone who has any advice at all please let me know. We LOVE our son and only wish for him to be happy, cared for, and safe. We do not want to see him institutionalized for the rest of his life. We are willing to do anything it takes to make things better for him and hopefully us as well.
Thank you in advance for any insight you might have.
Bubsmom
That's so sad. Look, I'm no doctor, but it sounds like the med route isn't helping. If he is bi-polar, why are they giving him two AD's that can cause manic reactions? Wellbutrin and Strattera are both norepinphrine re-uptake inhibitors, norepinphrine is basically adrenaline. Wellbutrin also inhibits re-uptake of dopamine, dopamine is an intermediate to adrenaline. So no wonder he's a bit jacked up, and needs clonodine or risperdal to settle him down...which you say doesn't work so good anyway.
Since you've tried all meds possible and he is just getting worse, do you think another avenue might work? I don't know how many alternative medicine doctors there are who can treat this stuff, but I'd investigate it some, there is supposed to be a very good center in Chicago , I can't remember the name exactly, but they use supplements and amino acid therapy.
I read that Margo Kidder, the actress with bi-polar uses amino acid therapy and claims it worked much better than medication.
I'm not saying to yank him off all his meds, in fact, you can't it would be very dangerous.
Those types of meds must be slowly weaned off with medical supervision. Maybe you could find some second opinions or alternative doctors out there? Only things I've heard of that help brain problems are fish oil, amino acids, magnesium, and B-vitamins. I read B-vitamins can really make a difference in schizophrenia, liquid versions and injected are more absorbed than pills.
Good luck, I don't have any concrete answers but hopefully you can find something better than what is being done now for your son.....keep looking intil you find it... :angel:
GettingWellAgain
02-24-2005, 06:07 PM
I just want to add that I also am in agreeance with Jennita about your son possibly being extra agitated and out of control from being on two AD's. I strongly think that you should get a second opinion with a different type of doctor, an alternative doc probably being your best bet.
~Katalina
~Katalina
kerry1
02-24-2005, 07:21 PM
I'm on two kinds of AD meds and would like to wean off of them and replace them with natural, dietary treatments. I believe I have some kind of nutritional deficiency that's causing the blues. BUT I don't have all those severe diagnoses and I'm in a position to experiment with my own health. Margot Kidder has the same options. I've heard that vitamin therapy can help schizophrenics, but this poor boy has some pretty devastating problems. I'd be VERY careful.
GettingWellAgain
02-24-2005, 09:20 PM
kerry1,
I'd agree about being very careful, also. Especially with a child.
~Katalina
I'd agree about being very careful, also. Especially with a child.
~Katalina
Jennita
02-24-2005, 11:16 PM
I'll chime in here and say I agree with everyone, be very, very careful, whether you seek alternative doctors or not. Nobody, not even his regular docs should be taking him off a drug quickly(cold turkey) and putting him on another drug, or alternative method, without first allowing a slow withdrawal.
From what I read, Andrea Yates, the mother in the news who drowned her children was abruptly taken off an antipsychotic medication and put on Effexor, I guess her doc thought since the antipsychotic was causing some ill effects, she should get off it and apparentely he figured the Effexor would take care of any withdrawals....but next thing that happened is she flipped out and drowned her kids.
So who knows, maybe the tragedy would have been avoided if she would have been more slowly taken off, perhaps the Effexor caused her to become manic, at any rate, you see that it is important to slowly change things with your son......these psychiatric drugs are extremely potent/brain altering and extreme caution must be used no matter what.
Actually, I'm very anti-med, but in your son's case I would have told you, IMHO, to keep him ON the meds if they were actually helping the problems since he sounds like a bad case... but clearly things have escalated and meds are either not helping or contributing to the problems.
I wouldn't change things either without strict supervision by a medical doctor and staff who can handle the transitions or changes.
Your'e going to need alot of professional help, I hope and pray he can get better someday.... :angel:
From what I read, Andrea Yates, the mother in the news who drowned her children was abruptly taken off an antipsychotic medication and put on Effexor, I guess her doc thought since the antipsychotic was causing some ill effects, she should get off it and apparentely he figured the Effexor would take care of any withdrawals....but next thing that happened is she flipped out and drowned her kids.
So who knows, maybe the tragedy would have been avoided if she would have been more slowly taken off, perhaps the Effexor caused her to become manic, at any rate, you see that it is important to slowly change things with your son......these psychiatric drugs are extremely potent/brain altering and extreme caution must be used no matter what.
Actually, I'm very anti-med, but in your son's case I would have told you, IMHO, to keep him ON the meds if they were actually helping the problems since he sounds like a bad case... but clearly things have escalated and meds are either not helping or contributing to the problems.
I wouldn't change things either without strict supervision by a medical doctor and staff who can handle the transitions or changes.
Your'e going to need alot of professional help, I hope and pray he can get better someday.... :angel:
Bubsmomalso
02-25-2005, 01:04 AM
Thank you so much for all of your replies. They mean so very much to me. Sometimes I feel like there is no need to try to get help anymore since nothing has ever helped. I DO keep trying though. It just gets so frustrating when I feel like my husband and I are the only ones fighting for this kid who SO deserves to feel good. Our families are supportive of whatever we do or try, but they aren't the ones who go to all of the many many appointments and live with him and his moods and problems all day, every day. Does anyone know what I mean?
To answer some of the questions:
He has never just been yanked off of any med. The doctor slowly ups the dose when on a new med and slowly weans him off of it when they do change.
He has been on the current meds that I wrote of in my first post since last summer. The only thing that has changed since then is in the last three months since his coming home his psychiatrist has slowly upped his abilify.
About him being bi-polar:
We have been going to the same mental health care center since all of these behaviors and moods started almost four years ago. The first psychiatrist we saw diagnosed him as bi-polar without knowing my son had been molested. He only saw my son a few times before the office brought in a child and adolescent psychiatrist. My son then saw her until he was admitted to the hospital in October of 2003. She said that she did not agree with bi-polar and that the main cause of all the problems was due to my son's biological father abusing him emotionally, physically, and sexually. (In the time since she became my son's dr my son started telling my husband and I and his therapist all what his real dad had done to him. ) My son went for an interview with CPS and told them all about it. Everything he told everyone all was exactly the same, same details, same time frame, same place, same person who had done this to him. My ex husband,(son's biological dad) had an interview with a state policeman detective where in the report it says that my son's dad adamantely denied all of it and agreed to come in and take a polograph test. The appointment was set up and my ex never showed. Then the policeman's report says that he took all of this to the prosecutor who said no charges could be filed at this time.
Needless to say, after a long fight in court, my ex is only to have supervised visitation which he is to pay for. This has not happened once. Instead the ex called me numerous times demanding I let him see his son since I should know that he would never do anything to hurt him. The phone calls only stopped when we moved and no longer had the same number.
Mine and my DH's families have never said one single bad word about my ex or do we even bring him up unless my son does so as not to put any form of ideas in my son's head. All my son has told everyone has always been of his own will. I absolutely REFUSE to make my son any worse off than he is.
Alot of you have said in your posts to look for a dr who uses natural remedies such as vitamins and things like that. That sounds like a good plan to me. My question though is what do I tell or ask the dr and therapist that my son sees now. Will they fight me on weaning him off the meds? When do I start taking him to a new or different dr? Do we go to the new dr before getting him off the meds or wait until he is off them. Do I keep taking him to therapy and keep his case manager? And not the psychaitrist?
So many questions- I'm very sorry. I really do appreciate those of you who take your time to reply and give your thoughts, especially being that you all have your own problems to deal with every day. Once again thank you.
Love and heartfelt wishes to all of you
To answer some of the questions:
He has never just been yanked off of any med. The doctor slowly ups the dose when on a new med and slowly weans him off of it when they do change.
He has been on the current meds that I wrote of in my first post since last summer. The only thing that has changed since then is in the last three months since his coming home his psychiatrist has slowly upped his abilify.
About him being bi-polar:
We have been going to the same mental health care center since all of these behaviors and moods started almost four years ago. The first psychiatrist we saw diagnosed him as bi-polar without knowing my son had been molested. He only saw my son a few times before the office brought in a child and adolescent psychiatrist. My son then saw her until he was admitted to the hospital in October of 2003. She said that she did not agree with bi-polar and that the main cause of all the problems was due to my son's biological father abusing him emotionally, physically, and sexually. (In the time since she became my son's dr my son started telling my husband and I and his therapist all what his real dad had done to him. ) My son went for an interview with CPS and told them all about it. Everything he told everyone all was exactly the same, same details, same time frame, same place, same person who had done this to him. My ex husband,(son's biological dad) had an interview with a state policeman detective where in the report it says that my son's dad adamantely denied all of it and agreed to come in and take a polograph test. The appointment was set up and my ex never showed. Then the policeman's report says that he took all of this to the prosecutor who said no charges could be filed at this time.
Needless to say, after a long fight in court, my ex is only to have supervised visitation which he is to pay for. This has not happened once. Instead the ex called me numerous times demanding I let him see his son since I should know that he would never do anything to hurt him. The phone calls only stopped when we moved and no longer had the same number.
Mine and my DH's families have never said one single bad word about my ex or do we even bring him up unless my son does so as not to put any form of ideas in my son's head. All my son has told everyone has always been of his own will. I absolutely REFUSE to make my son any worse off than he is.
Alot of you have said in your posts to look for a dr who uses natural remedies such as vitamins and things like that. That sounds like a good plan to me. My question though is what do I tell or ask the dr and therapist that my son sees now. Will they fight me on weaning him off the meds? When do I start taking him to a new or different dr? Do we go to the new dr before getting him off the meds or wait until he is off them. Do I keep taking him to therapy and keep his case manager? And not the psychaitrist?
So many questions- I'm very sorry. I really do appreciate those of you who take your time to reply and give your thoughts, especially being that you all have your own problems to deal with every day. Once again thank you.
Love and heartfelt wishes to all of you
GettingWellAgain
02-25-2005, 04:12 PM
ANY of those psychotropic drugs, even the ones that aren't physically addictive, could and DO cause major withdrawal effects, and I can tell you that from my own personal experience. ALL psychiatric medications should be tapered slowly and one at a time, and like Jennita said, in your son's case, you should be VERY, VERY careful about doing so. These medications are to be treated so much more delicately and seriously than they are being treated in today's society. With all of the tragedy lately connected to these meds, maybe America is finally starting to realize that.
~Katalina
~Katalina
Jennita
02-25-2005, 05:10 PM
Thank you so much for all of your replies. They mean so very much to me. Sometimes I feel like there is no need to try to get help anymore since nothing has ever helped. I DO keep trying though. It just gets so frustrating when I feel like my husband and I are the only ones fighting for this kid who SO deserves to feel good. Our families are supportive of whatever we do or try, but they aren't the ones who go to all of the many many appointments and live with him and his moods and problems all day, every day. Does anyone know what I mean?
To answer some of the questions:
He has never just been yanked off of any med. The doctor slowly ups the dose when on a new med and slowly weans him off of it when they do change.
He has been on the current meds that I wrote of in my first post since last summer. The only thing that has changed since then is in the last three months since his coming home his psychiatrist has slowly upped his abilify.
About him being bi-polar:
We have been going to the same mental health care center since all of these behaviors and moods started almost four years ago. The first psychiatrist we saw diagnosed him as bi-polar without knowing my son had been molested. He only saw my son a few times before the office brought in a child and adolescent psychiatrist. My son then saw her until he was admitted to the hospital in October of 2003. She said that she did not agree with bi-polar and that the main cause of all the problems was due to my son's biological father abusing him emotionally, physically, and sexually. (In the time since she became my son's dr my son started telling my husband and I and his therapist all what his real dad had done to him. ) My son went for an interview with CPS and told them all about it. Everything he told everyone all was exactly the same, same details, same time frame, same place, same person who had done this to him. My ex husband,(son's biological dad) had an interview with a state policeman detective where in the report it says that my son's dad adamantely denied all of it and agreed to come in and take a polograph test. The appointment was set up and my ex never showed. Then the policeman's report says that he took all of this to the prosecutor who said no charges could be filed at this time.
Needless to say, after a long fight in court, my ex is only to have supervised visitation which he is to pay for. This has not happened once. Instead the ex called me numerous times demanding I let him see his son since I should know that he would never do anything to hurt him. The phone calls only stopped when we moved and no longer had the same number.
Mine and my DH's families have never said one single bad word about my ex or do we even bring him up unless my son does so as not to put any form of ideas in my son's head. All my son has told everyone has always been of his own will. I absolutely REFUSE to make my son any worse off than he is.
Alot of you have said in your posts to look for a dr who uses natural remedies such as vitamins and things like that. That sounds like a good plan to me. My question though is what do I tell or ask the dr and therapist that my son sees now. Will they fight me on weaning him off the meds? When do I start taking him to a new or different dr? Do we go to the new dr before getting him off the meds or wait until he is off them. Do I keep taking him to therapy and keep his case manager? And not the psychaitrist?
So many questions- I'm very sorry. I really do appreciate those of you who take your time to reply and give your thoughts, especially being that you all have your own problems to deal with every day. Once again thank you.
Love and heartfelt wishes to all of you
Oh my, how sad that your son was abused like that. That may have been his problem from the beginning, and bi-polar diagnosis may have been inaccurate. Problem is, once a person is on the drugs, the drugs can effect the brain in such profound ways that in itself needs to be addressed.
From what I've read, when a drug is given theraputically every single day, the brain will eventually not even try to produce the action on it's own the drug normally does, this is dependancy and a shut-down of the brain's own ability to do the job. Then, over time, the brain, with it's wonderful survival instinct, tries to defend itself by building of opposing receptors to the drugs.
In it's effort to control itself over the chemicals, it may set up too many of the wrong receptors(imbalance) in response to the chemicals. This is what can cause tolerance to drug effects, thus the need to escalate dosages or change drugs altogether, only most of the drugs are very simular so the brain could already have alot of opposing receptors built up for the new drug and will soon cover what it hasn't.
Tolerance building can be very slow or very fast, no set time on that. When things are that imbalanced, no way could the brain function correctly if the drugs are taken away suddenly, the brain needs alot of time to re-adjust or recover. Withdrawal itself is only the beginning, after that's over, withdrawal-type symptoms can linger while the brain is recovering, or re-learning how to produce/recieve/metabolize it's own chemicals again.
I'm glad your docs were cautious about the tapering, but the brain is also effected by the new drugs so the cycle continues without any real healing.
So your son, if he was not actually bi-polar to start with, may actually have a chance at recovery but this would be a long, long process with tapering and staying off drugs completely.
Again, this is not something I would say could be done without medical supervision in case he responds badly. You know, to illustrate the unsure nature of chemicals, I've read of some people who have went through this and actually felt better and better as the drugs were weaned, whearas others had continued withdrawal symptoms not only during tapering but long after. It's like night and day for some people. It's very hard to guess how your son would recover, and since his state is so bad, he would have to be watched closely. I always feel it's good to expect the worst case scenario, in order to be prepared. If things end up going smoothly, then it's just that much easier.
I wish I had good news about your doc's support on this issue of perhaps trying other methods besides drugs, I'm not sure your docs will approve. The first line of treatment for most of psychiatry these days is drugs; it's become the instant answer. And once the cycle of chemicals begins, things get complicated and there are no instant answers anymore. But you should ask them and insist they give you the medical support you need for your son.
So, I've never done this sort of thing, so I can't tell you how to find the people who may help you, but you may run into alot of brick walls since drug therapy seems to be the absolute answer as far a most doctors are concerned. It will be hard to find support, however, don't give up looking.....I've read some people have found very supportive doctors when it comes to weaning drugs and finding alternatives.
As a side project for your own information, you might want to read up on Dr. Peter Breggin, he offers alot of infomation on the web. He is one of the few psychiatrists in existance who is anti-drug, so much so he is considered a black sheep in the profession.
I have read others like him who are not so boldly anti-drug but anti-drug nevertheless, have also been scrutinized like Dr. David Healy, a psychiatrist who does prescribe but only very sparingly and has written papers on the dangers of Prozac.
Dr. Ann Tracy, Ann is not a psychiatrist but psychologist PHD and is a very radically anti drug. Her site is in that very strong tone. There are many professionals out there Dr. Loren Mosher, Dr. Joesph Glenmullin, etc. too. They do write books but offer alot of infomation without the need to buy their books.
Many "pro-drug" professionals have written books too, but alot of people ignore that and claim these anti-drug people just want to sell books.
However, usually their websites are full of free information, so money isn't the only motivation and who can say mainstream psychiatry has no monetary gains from their work, eh?? I figure everyone needs to make their living, nothing wrong with that.
So, if you want some interesting reading, check those people out. They have alot of research backing up their beliefs and I feel they are really sincere in helping people who have been failed by conventional psychiatry.
A warning: Dr. Peter Breggin's info and Dr. Ann Tracy's come on very strong and may alarm you; do not let it. They do that because they are passionately anti-drug, but they sometimes scare the wits out of some people with all the bad news.
The reason you should not be alarmed at their severe warnings of the toxic problems of these drugs is because I've personally read of many, many success stories, survivors of psychiatry and medication. Your son can be fine, he's not doomed. He does need the kid-gloves handling and it may take you some time to find just the right medical doctors and alternative therapy people to guide you.
Then again, who knows, perhaps he would be one to recover fast and without much problems...the thing is, one never, never knows how they will react and recover, so it's always good to figure on "worst case" scenario to be safe and sure.....
Wish I knew where to tell you where to go,, who to see, it is something you will have to explore for what's available. Let us know what you find out!
To answer some of the questions:
He has never just been yanked off of any med. The doctor slowly ups the dose when on a new med and slowly weans him off of it when they do change.
He has been on the current meds that I wrote of in my first post since last summer. The only thing that has changed since then is in the last three months since his coming home his psychiatrist has slowly upped his abilify.
About him being bi-polar:
We have been going to the same mental health care center since all of these behaviors and moods started almost four years ago. The first psychiatrist we saw diagnosed him as bi-polar without knowing my son had been molested. He only saw my son a few times before the office brought in a child and adolescent psychiatrist. My son then saw her until he was admitted to the hospital in October of 2003. She said that she did not agree with bi-polar and that the main cause of all the problems was due to my son's biological father abusing him emotionally, physically, and sexually. (In the time since she became my son's dr my son started telling my husband and I and his therapist all what his real dad had done to him. ) My son went for an interview with CPS and told them all about it. Everything he told everyone all was exactly the same, same details, same time frame, same place, same person who had done this to him. My ex husband,(son's biological dad) had an interview with a state policeman detective where in the report it says that my son's dad adamantely denied all of it and agreed to come in and take a polograph test. The appointment was set up and my ex never showed. Then the policeman's report says that he took all of this to the prosecutor who said no charges could be filed at this time.
Needless to say, after a long fight in court, my ex is only to have supervised visitation which he is to pay for. This has not happened once. Instead the ex called me numerous times demanding I let him see his son since I should know that he would never do anything to hurt him. The phone calls only stopped when we moved and no longer had the same number.
Mine and my DH's families have never said one single bad word about my ex or do we even bring him up unless my son does so as not to put any form of ideas in my son's head. All my son has told everyone has always been of his own will. I absolutely REFUSE to make my son any worse off than he is.
Alot of you have said in your posts to look for a dr who uses natural remedies such as vitamins and things like that. That sounds like a good plan to me. My question though is what do I tell or ask the dr and therapist that my son sees now. Will they fight me on weaning him off the meds? When do I start taking him to a new or different dr? Do we go to the new dr before getting him off the meds or wait until he is off them. Do I keep taking him to therapy and keep his case manager? And not the psychaitrist?
So many questions- I'm very sorry. I really do appreciate those of you who take your time to reply and give your thoughts, especially being that you all have your own problems to deal with every day. Once again thank you.
Love and heartfelt wishes to all of you
Oh my, how sad that your son was abused like that. That may have been his problem from the beginning, and bi-polar diagnosis may have been inaccurate. Problem is, once a person is on the drugs, the drugs can effect the brain in such profound ways that in itself needs to be addressed.
From what I've read, when a drug is given theraputically every single day, the brain will eventually not even try to produce the action on it's own the drug normally does, this is dependancy and a shut-down of the brain's own ability to do the job. Then, over time, the brain, with it's wonderful survival instinct, tries to defend itself by building of opposing receptors to the drugs.
In it's effort to control itself over the chemicals, it may set up too many of the wrong receptors(imbalance) in response to the chemicals. This is what can cause tolerance to drug effects, thus the need to escalate dosages or change drugs altogether, only most of the drugs are very simular so the brain could already have alot of opposing receptors built up for the new drug and will soon cover what it hasn't.
Tolerance building can be very slow or very fast, no set time on that. When things are that imbalanced, no way could the brain function correctly if the drugs are taken away suddenly, the brain needs alot of time to re-adjust or recover. Withdrawal itself is only the beginning, after that's over, withdrawal-type symptoms can linger while the brain is recovering, or re-learning how to produce/recieve/metabolize it's own chemicals again.
I'm glad your docs were cautious about the tapering, but the brain is also effected by the new drugs so the cycle continues without any real healing.
So your son, if he was not actually bi-polar to start with, may actually have a chance at recovery but this would be a long, long process with tapering and staying off drugs completely.
Again, this is not something I would say could be done without medical supervision in case he responds badly. You know, to illustrate the unsure nature of chemicals, I've read of some people who have went through this and actually felt better and better as the drugs were weaned, whearas others had continued withdrawal symptoms not only during tapering but long after. It's like night and day for some people. It's very hard to guess how your son would recover, and since his state is so bad, he would have to be watched closely. I always feel it's good to expect the worst case scenario, in order to be prepared. If things end up going smoothly, then it's just that much easier.
I wish I had good news about your doc's support on this issue of perhaps trying other methods besides drugs, I'm not sure your docs will approve. The first line of treatment for most of psychiatry these days is drugs; it's become the instant answer. And once the cycle of chemicals begins, things get complicated and there are no instant answers anymore. But you should ask them and insist they give you the medical support you need for your son.
So, I've never done this sort of thing, so I can't tell you how to find the people who may help you, but you may run into alot of brick walls since drug therapy seems to be the absolute answer as far a most doctors are concerned. It will be hard to find support, however, don't give up looking.....I've read some people have found very supportive doctors when it comes to weaning drugs and finding alternatives.
As a side project for your own information, you might want to read up on Dr. Peter Breggin, he offers alot of infomation on the web. He is one of the few psychiatrists in existance who is anti-drug, so much so he is considered a black sheep in the profession.
I have read others like him who are not so boldly anti-drug but anti-drug nevertheless, have also been scrutinized like Dr. David Healy, a psychiatrist who does prescribe but only very sparingly and has written papers on the dangers of Prozac.
Dr. Ann Tracy, Ann is not a psychiatrist but psychologist PHD and is a very radically anti drug. Her site is in that very strong tone. There are many professionals out there Dr. Loren Mosher, Dr. Joesph Glenmullin, etc. too. They do write books but offer alot of infomation without the need to buy their books.
Many "pro-drug" professionals have written books too, but alot of people ignore that and claim these anti-drug people just want to sell books.
However, usually their websites are full of free information, so money isn't the only motivation and who can say mainstream psychiatry has no monetary gains from their work, eh?? I figure everyone needs to make their living, nothing wrong with that.
So, if you want some interesting reading, check those people out. They have alot of research backing up their beliefs and I feel they are really sincere in helping people who have been failed by conventional psychiatry.
A warning: Dr. Peter Breggin's info and Dr. Ann Tracy's come on very strong and may alarm you; do not let it. They do that because they are passionately anti-drug, but they sometimes scare the wits out of some people with all the bad news.
The reason you should not be alarmed at their severe warnings of the toxic problems of these drugs is because I've personally read of many, many success stories, survivors of psychiatry and medication. Your son can be fine, he's not doomed. He does need the kid-gloves handling and it may take you some time to find just the right medical doctors and alternative therapy people to guide you.
Then again, who knows, perhaps he would be one to recover fast and without much problems...the thing is, one never, never knows how they will react and recover, so it's always good to figure on "worst case" scenario to be safe and sure.....
Wish I knew where to tell you where to go,, who to see, it is something you will have to explore for what's available. Let us know what you find out!
GettingWellAgain
02-25-2005, 05:30 PM
Jennita,
I thought that I was quite educated on psychiatric medications, but your knowledge far exceeds mine, and I just want to thank you for the names of the doctors that are anti-medication, so I can learn more: )
I thought that I was quite educated on psychiatric medications, but your knowledge far exceeds mine, and I just want to thank you for the names of the doctors that are anti-medication, so I can learn more: )
Bubsmomalso
02-26-2005, 01:00 AM
Jennita, Thank you for all of those names. As soon as I get done on the boards here I'm going to do searchs on them. Also you have just taught me so much about his meds and the effect on his brain. You would think the dr's job would be to tell me some of these things, but apparantly not. I'm so fed up with them.
Poor kid woke up last night just after I went to bed with a fever, sore throat, stomach ache, and throwing up. The flu has been going around here and I guess it caught up with him. The only thing the doctor has ok'd to give him with all the other meds is tylenol. I just hope he gets over it within a day or two at the most. He feels so bad. I feel bad for him. Normally, he is never sick with anything besides a cold every now and again. The last time he had the flu or anything has been at least a couple of years ago.
Another question I have is how do I find a good support group or parenting group or class? The place my son goes has many parent's groups and I have done them all, but the therapists in charge of them are always spending time trying to make the parents not feel like they are bad parents and to teach them how to take care of themselves. I'm sorry, but I do not feel like the problems with my son are because something is wrong with me or that I'm a bad parent. Then the problems that they discuss are problems that I myself would be more than willing to try to handle. When it gets to be my turn to talk everyone just looks in amazement as if they don't believe me or don't get how or why I even try to make things any better for him.
Then, and this is my favorite thing to hear, the therapist or whoever wishes to chime in say how extreme my son's behaviors and moods and actions are.
Ok, truthfully, I HATE to hear them say extreme. I already know he is. Do they think I just put him in the hospital for over a year because I was tired of being a mom or something and wanted to go out and party? Then they just say that they don't know how my husband, daughter, and I cope just living day to day without losing it.
Now come on--- that's not helping me in the least.
Anyway, sorry about the venting. It's just that here is the only place where the people very kindly say they are sorry for what has happened to my son, offer their prayers and then give me some ideas or some new things to try for him. As always, thank you all for your time and thoughts.
:angel:
Bubsmomalso
Poor kid woke up last night just after I went to bed with a fever, sore throat, stomach ache, and throwing up. The flu has been going around here and I guess it caught up with him. The only thing the doctor has ok'd to give him with all the other meds is tylenol. I just hope he gets over it within a day or two at the most. He feels so bad. I feel bad for him. Normally, he is never sick with anything besides a cold every now and again. The last time he had the flu or anything has been at least a couple of years ago.
Another question I have is how do I find a good support group or parenting group or class? The place my son goes has many parent's groups and I have done them all, but the therapists in charge of them are always spending time trying to make the parents not feel like they are bad parents and to teach them how to take care of themselves. I'm sorry, but I do not feel like the problems with my son are because something is wrong with me or that I'm a bad parent. Then the problems that they discuss are problems that I myself would be more than willing to try to handle. When it gets to be my turn to talk everyone just looks in amazement as if they don't believe me or don't get how or why I even try to make things any better for him.
Then, and this is my favorite thing to hear, the therapist or whoever wishes to chime in say how extreme my son's behaviors and moods and actions are.
Ok, truthfully, I HATE to hear them say extreme. I already know he is. Do they think I just put him in the hospital for over a year because I was tired of being a mom or something and wanted to go out and party? Then they just say that they don't know how my husband, daughter, and I cope just living day to day without losing it.
Now come on--- that's not helping me in the least.
Anyway, sorry about the venting. It's just that here is the only place where the people very kindly say they are sorry for what has happened to my son, offer their prayers and then give me some ideas or some new things to try for him. As always, thank you all for your time and thoughts.
:angel:
Bubsmomalso
washee
02-26-2005, 02:30 AM
Just curious if in all those diagnosis if personality disorder was ever mentioned? Seems like alot of meds to have on board. For bi-polar it's common to see an Anti-D, a mood stabilizer and an psychotropic, but so many meds?? I agree about the second opinion. Good luck
Bubsmomalso
02-26-2005, 02:53 AM
No mention of personality disorder, only what all i mentioned in first post, as well as a maybe schizopherenia(sp?) just recently he told his case manager and me and my husband that he sees ghost like people who tell him to do bad things. he said the people are see through and they look just like him, but they are bad. he's never said that before in the last four years.
I don't remember if I mentioned that while at the hospital he saw a neurologist who did tests and said that there is nothing physically wrong with his brain.
thanks for the reply
I don't remember if I mentioned that while at the hospital he saw a neurologist who did tests and said that there is nothing physically wrong with his brain.
thanks for the reply
Bubsmomalso
02-26-2005, 02:54 AM
oh yeah, does anti-d mean antidepressant?
Ruth6:11
02-26-2005, 11:02 AM
I think that some caution has to be entered into when the discussion is between "vitamins & supplements" and FDA approved medication.
Either extreme can be unrealistic.
I would tend to steer clear of fanatics on EITHER end of the scale if I'm interested in unbiased information. Look for clinical studies on any natural remedies before leaping away from medical science.
Ask a doctor questions - as many as you can think of - write them down.
You are vulnerable to anything that may potentially help your son - please exercise caution..
A neurologist would not have been able to see anything physically wrong with my brain either but a simple form of salt - with an FDA approved label on it - has made my life liveable.
It won't be that easy for your son of course; no quick fix or "get rid of drugs" mentality will help his core problems. Abuse, possible chemical imbalance... He is lucky to have you on his side - but please, PLEASE search with caution through all the information available from the fringe elements of both natural and prescribed medication.
Either extreme can be unrealistic.
I would tend to steer clear of fanatics on EITHER end of the scale if I'm interested in unbiased information. Look for clinical studies on any natural remedies before leaping away from medical science.
Ask a doctor questions - as many as you can think of - write them down.
You are vulnerable to anything that may potentially help your son - please exercise caution..
A neurologist would not have been able to see anything physically wrong with my brain either but a simple form of salt - with an FDA approved label on it - has made my life liveable.
It won't be that easy for your son of course; no quick fix or "get rid of drugs" mentality will help his core problems. Abuse, possible chemical imbalance... He is lucky to have you on his side - but please, PLEASE search with caution through all the information available from the fringe elements of both natural and prescribed medication.
Jennita
02-26-2005, 03:48 PM
Solstice and bubsmom, your welcome. I agree a bit with Ruth, although I'm definately on the anti-med side, nobody with such problems so severe should become too extreme one way or the other. That's why I'm hoping you can find some medical people to supervise the transition of eventually being off drugs.
If it is successful, it would be wonderful but also be ready in case it's not, one really can't predict, not even docs can peer into the inner synapse of chemical reactions going on in your son's brain every minute of every day, that's why sometimes drugs are not the ultimate answer or can cause more problems. But for some people, it may be all they have.
I find it to be good news, however, that his neurologist says there is nothing wrong with his brain...thus alot of it could be chemical reactions, at least no brain damage that's a relief.
So you are saying those ghost images are new??? This is entirely possible to be caused by his medications. Dr. Ann Tracy mentions this as a buildup of serotonin sometimes caused by SSRi's, it's an REM disorder. The person has waking nightmares, so to speak. This also is a feature of schizophrenia.
Here's an odd connection you might ponder....they found out in the 1960's that LSD caused this too and many users became schizophrenic. LSD is a serotonin-releasing drug, the brain becomes saturated with it and this causes the hallucinations. SSRi's do not release serotoin, but they do inhibit reuptake(metabolism) and thus a buildup in the brain can occur over time if not properly metabolised, thus again too much serotonin only at a much slower pace. Alot also depends on how well a person does metabolize the serotonin, although the point of SSRi's is to inhibit that.
Ok, I admit, at first when I read on the internet that Dr. Ann Tracy was linking LSD to SSRI's, I thought she was a Kookoo, with a capital KOOK!......
But then, the weirdest thing happened to me one day. I decided to flip on the T.V one afternoon, which is not typical of me because daytime T.V. is so boring to me. I stopped on a documentary, it was on a cable station. It caught my attention....they were describing the results and findings of the 1960's drug experiments with LSD!
I couldn't believe it, the researchers from that era were talking about how they discovered a mood lifting side effect of LSD and how it would be useful in developing future drugs for withdrawing drug and alcohol addicts, helping alliviate depression, and stop people from smoking among other things!
They were very excited. The documentary went on to mention when the government banned the LSD experiments at the end of the '60's, many psychiatric researchers went to foreign jungles to seek out hallucinagens to continue their experiments well into the 1970's. So I guess antidepressants are the child of those experiments, using serotonin in a slower way but still using it.
I went back to Ann Tracy's site. I didn't think she was a Kook anymore!
I'm sorry your son also has the flu now. Another draw back is the drug interactions and how one is restricted from using other medications for illness when they need it. I hope he'll feel better soon....they can't give him anything for his stomach? Tylenol is it? That's not much for the flu...so sorry to hear that.
If it is successful, it would be wonderful but also be ready in case it's not, one really can't predict, not even docs can peer into the inner synapse of chemical reactions going on in your son's brain every minute of every day, that's why sometimes drugs are not the ultimate answer or can cause more problems. But for some people, it may be all they have.
I find it to be good news, however, that his neurologist says there is nothing wrong with his brain...thus alot of it could be chemical reactions, at least no brain damage that's a relief.
So you are saying those ghost images are new??? This is entirely possible to be caused by his medications. Dr. Ann Tracy mentions this as a buildup of serotonin sometimes caused by SSRi's, it's an REM disorder. The person has waking nightmares, so to speak. This also is a feature of schizophrenia.
Here's an odd connection you might ponder....they found out in the 1960's that LSD caused this too and many users became schizophrenic. LSD is a serotonin-releasing drug, the brain becomes saturated with it and this causes the hallucinations. SSRi's do not release serotoin, but they do inhibit reuptake(metabolism) and thus a buildup in the brain can occur over time if not properly metabolised, thus again too much serotonin only at a much slower pace. Alot also depends on how well a person does metabolize the serotonin, although the point of SSRi's is to inhibit that.
Ok, I admit, at first when I read on the internet that Dr. Ann Tracy was linking LSD to SSRI's, I thought she was a Kookoo, with a capital KOOK!......
But then, the weirdest thing happened to me one day. I decided to flip on the T.V one afternoon, which is not typical of me because daytime T.V. is so boring to me. I stopped on a documentary, it was on a cable station. It caught my attention....they were describing the results and findings of the 1960's drug experiments with LSD!
I couldn't believe it, the researchers from that era were talking about how they discovered a mood lifting side effect of LSD and how it would be useful in developing future drugs for withdrawing drug and alcohol addicts, helping alliviate depression, and stop people from smoking among other things!
They were very excited. The documentary went on to mention when the government banned the LSD experiments at the end of the '60's, many psychiatric researchers went to foreign jungles to seek out hallucinagens to continue their experiments well into the 1970's. So I guess antidepressants are the child of those experiments, using serotonin in a slower way but still using it.
I went back to Ann Tracy's site. I didn't think she was a Kook anymore!
I'm sorry your son also has the flu now. Another draw back is the drug interactions and how one is restricted from using other medications for illness when they need it. I hope he'll feel better soon....they can't give him anything for his stomach? Tylenol is it? That's not much for the flu...so sorry to hear that.
Jennita
02-26-2005, 03:57 PM
Jennita, Thank you for all of those names. As soon as I get done on the boards here I'm going to do searchs on them. Also you have just taught me so much about his meds and the effect on his brain. You would think the dr's job would be to tell me some of these things, but apparantly not. I'm so fed up with them.
Poor kid woke up last night just after I went to bed with a fever, sore throat, stomach ache, and throwing up. The flu has been going around here and I guess it caught up with him. The only thing the doctor has ok'd to give him with all the other meds is tylenol. I just hope he gets over it within a day or two at the most. He feels so bad. I feel bad for him. Normally, he is never sick with anything besides a cold every now and again. The last time he had the flu or anything has been at least a couple of years ago.
Another question I have is how do I find a good support group or parenting group or class? The place my son goes has many parent's groups and I have done them all, but the therapists in charge of them are always spending time trying to make the parents not feel like they are bad parents and to teach them how to take care of themselves. I'm sorry, but I do not feel like the problems with my son are because something is wrong with me or that I'm a bad parent. Then the problems that they discuss are problems that I myself would be more than willing to try to handle. When it gets to be my turn to talk everyone just looks in amazement as if they don't believe me or don't get how or why I even try to make things any better for him.
Then, and this is my favorite thing to hear, the therapist or whoever wishes to chime in say how extreme my son's behaviors and moods and actions are.
Ok, truthfully, I HATE to hear them say extreme. I already know he is. Do they think I just put him in the hospital for over a year because I was tired of being a mom or something and wanted to go out and party? Then they just say that they don't know how my husband, daughter, and I cope just living day to day without losing it.
Now come on--- that's not helping me in the least.
Anyway, sorry about the venting. It's just that here is the only place where the people very kindly say they are sorry for what has happened to my son, offer their prayers and then give me some ideas or some new things to try for him. As always, thank you all for your time and thoughts.
:angel:
Bubsmomalso
I understand. It is so frustrating when although they may have good intentions at those meetings, they are just moving their jaws and giving you nothing, no real help or information and taking away valuable time.
I did say a small prayer for your son. I'm not sure how God handles this stuff or helps it, but we ask for his help nevertheless.
I know they said and even we all here have said your son was extreme, but extreme to me does not equal doomed! I've heard of such people totally recovering from this. I think he can too. Have you mentioned all this to him? It would be good to know if he is willing to apply himself, not to one type of therapy, med, vitamin, etc, but to the idea of just getting better? :)
Some people say if you feel in your mind you won't get better, you won't, and vice versa.
Anyway, we are all here to help. None of us would say throw away the doctors or medical help (after all, we are not doctors or in the medical field), if that is what your son needs, but it's really your decision to stay with the current plan longer or not. I hope either way he will get better!! :angel:
Poor kid woke up last night just after I went to bed with a fever, sore throat, stomach ache, and throwing up. The flu has been going around here and I guess it caught up with him. The only thing the doctor has ok'd to give him with all the other meds is tylenol. I just hope he gets over it within a day or two at the most. He feels so bad. I feel bad for him. Normally, he is never sick with anything besides a cold every now and again. The last time he had the flu or anything has been at least a couple of years ago.
Another question I have is how do I find a good support group or parenting group or class? The place my son goes has many parent's groups and I have done them all, but the therapists in charge of them are always spending time trying to make the parents not feel like they are bad parents and to teach them how to take care of themselves. I'm sorry, but I do not feel like the problems with my son are because something is wrong with me or that I'm a bad parent. Then the problems that they discuss are problems that I myself would be more than willing to try to handle. When it gets to be my turn to talk everyone just looks in amazement as if they don't believe me or don't get how or why I even try to make things any better for him.
Then, and this is my favorite thing to hear, the therapist or whoever wishes to chime in say how extreme my son's behaviors and moods and actions are.
Ok, truthfully, I HATE to hear them say extreme. I already know he is. Do they think I just put him in the hospital for over a year because I was tired of being a mom or something and wanted to go out and party? Then they just say that they don't know how my husband, daughter, and I cope just living day to day without losing it.
Now come on--- that's not helping me in the least.
Anyway, sorry about the venting. It's just that here is the only place where the people very kindly say they are sorry for what has happened to my son, offer their prayers and then give me some ideas or some new things to try for him. As always, thank you all for your time and thoughts.
:angel:
Bubsmomalso
I understand. It is so frustrating when although they may have good intentions at those meetings, they are just moving their jaws and giving you nothing, no real help or information and taking away valuable time.
I did say a small prayer for your son. I'm not sure how God handles this stuff or helps it, but we ask for his help nevertheless.
I know they said and even we all here have said your son was extreme, but extreme to me does not equal doomed! I've heard of such people totally recovering from this. I think he can too. Have you mentioned all this to him? It would be good to know if he is willing to apply himself, not to one type of therapy, med, vitamin, etc, but to the idea of just getting better? :)
Some people say if you feel in your mind you won't get better, you won't, and vice versa.
Anyway, we are all here to help. None of us would say throw away the doctors or medical help (after all, we are not doctors or in the medical field), if that is what your son needs, but it's really your decision to stay with the current plan longer or not. I hope either way he will get better!! :angel:
index.html
02-26-2005, 04:21 PM
Bubsmom, I'm afraid that I don't have much advice but I did want to say "God Bless You" and let you know that you and your son are in my thoughts and prayers.
I also have to chime in with the others who have said "be careful" when you think about weaning meds and going with alternative treatments. I guess my primary question for you along those lines would be this: when you think back to how your son was before he started medication, is he better at all? I know the docs have said his symptoms aren't adequately controlled on medication but are his symptoms improved? If not, then I probably would also say try the alternative options, they can't hurt. But, if he's improved at all on medication, I'd hate to see you jeopardize that improvement. You're obviously a highly intelligent, caring woman who probably doesn't need these cautions but I still felt the need to chime in.
If you visit the bipolar board, you'll find that it is not at all unusual for a biplolar individual to be prescribed antidepressants along with mood stabilizers. While it is true that antidepressants - especially one like wellbutrin- can "rev up" a bipolar patient (especially a pediatric patient), it is also true that mood stabilizers tend to level out the manic moods, but not the depressive moods. That's what the antidepressants are for. So, if your son is truly bipolar, this is not a contra-indicated combination for him.
I feel for you. I wish I could do something to help!
I also have to chime in with the others who have said "be careful" when you think about weaning meds and going with alternative treatments. I guess my primary question for you along those lines would be this: when you think back to how your son was before he started medication, is he better at all? I know the docs have said his symptoms aren't adequately controlled on medication but are his symptoms improved? If not, then I probably would also say try the alternative options, they can't hurt. But, if he's improved at all on medication, I'd hate to see you jeopardize that improvement. You're obviously a highly intelligent, caring woman who probably doesn't need these cautions but I still felt the need to chime in.
If you visit the bipolar board, you'll find that it is not at all unusual for a biplolar individual to be prescribed antidepressants along with mood stabilizers. While it is true that antidepressants - especially one like wellbutrin- can "rev up" a bipolar patient (especially a pediatric patient), it is also true that mood stabilizers tend to level out the manic moods, but not the depressive moods. That's what the antidepressants are for. So, if your son is truly bipolar, this is not a contra-indicated combination for him.
I feel for you. I wish I could do something to help!
Jennita
02-26-2005, 04:25 PM
oh yeah, does anti-d mean antidepressant?
Yeah, anti-d, AD, SSRI, etc... :wave:
Yeah, anti-d, AD, SSRI, etc... :wave:
Bubsmomalso
02-27-2005, 12:42 AM
Thanks for all the input. About him being any better since going on any of the meds, I honestly have to say no, no better. Not even a little.
My son's moods change so frequently. One minute he is doing fine, happy as a clam. Ten minutes later he is much madder than you would think an eight year old could ever be. Reward systems don't work. Or I should say don't work more than once in a while. It's like he will try and succeed and then later no matter what the prize, how much he would like it, how cool it would be he can't controll himself for even the shortest time to gain it. Then after he does get his reward you can't ever use that one again.
He is very demanding of everyone at all times. The only thing we've seen that the meds do is make him sleepy after he takes them so he takes a nap.
He is behind a grade as far as school goes. He is homebound schooled. A teacher comes to our house and works with him for one-two hours three times a week. He can't handle any more than that. When he does do his work he is very quick to learn something. He nearly always gets it all right. It's just getting him to do the work. He is mad the entire time. He is bored and won't do it if he has already done something like it. And if he's never done it he gets frustrated and confused and says that he is stupid and it is too hard. When he actually sits for a couple minutes to learn something new then it's not too hard and he finishes the page or lesson in no time flat.
He does not like to be alone. He hates to play by himself and will cry, yell, and scream if sister doesn't want to play or mom and dad are busy. When we or other children play with him or even other adults he gets mad and violent towards us almost immediately.
He is not good in groups. He hates the noise and is scared of the people. This happens in extended family groups also, not just with strangers. We have to keep blinds, curtains, or blankets over the window in his room as he is scared that bad people will hurt him or try to take him. Yet, to hear him talk, if someone were to kidnap him, he would beat them up and get away. They couldnt hurt him.
He does not like loud noises at all. In kindergarten at his christmas show he stood on the step things with the other students in his class and sang the songs with his hands over his ears the whole time. (He was in public school at that time.)
My husband and I have to hold him to keep him from hurting himself acidentally or really doing some damage to the house at times. He gets so mad at us sometimes that he tries to hit, kick, or bite us and then the few times that he does then he is so sorry. He completely stops throwing the fit and makes sure that we are ok.
Sorry to go on so long, just get carried away and forget that sometimes people don't need to hear every detail. Plus, it helps me feel better somehow just getting it all off my chest. Thanks guys. :wave:
My son's moods change so frequently. One minute he is doing fine, happy as a clam. Ten minutes later he is much madder than you would think an eight year old could ever be. Reward systems don't work. Or I should say don't work more than once in a while. It's like he will try and succeed and then later no matter what the prize, how much he would like it, how cool it would be he can't controll himself for even the shortest time to gain it. Then after he does get his reward you can't ever use that one again.
He is very demanding of everyone at all times. The only thing we've seen that the meds do is make him sleepy after he takes them so he takes a nap.
He is behind a grade as far as school goes. He is homebound schooled. A teacher comes to our house and works with him for one-two hours three times a week. He can't handle any more than that. When he does do his work he is very quick to learn something. He nearly always gets it all right. It's just getting him to do the work. He is mad the entire time. He is bored and won't do it if he has already done something like it. And if he's never done it he gets frustrated and confused and says that he is stupid and it is too hard. When he actually sits for a couple minutes to learn something new then it's not too hard and he finishes the page or lesson in no time flat.
He does not like to be alone. He hates to play by himself and will cry, yell, and scream if sister doesn't want to play or mom and dad are busy. When we or other children play with him or even other adults he gets mad and violent towards us almost immediately.
He is not good in groups. He hates the noise and is scared of the people. This happens in extended family groups also, not just with strangers. We have to keep blinds, curtains, or blankets over the window in his room as he is scared that bad people will hurt him or try to take him. Yet, to hear him talk, if someone were to kidnap him, he would beat them up and get away. They couldnt hurt him.
He does not like loud noises at all. In kindergarten at his christmas show he stood on the step things with the other students in his class and sang the songs with his hands over his ears the whole time. (He was in public school at that time.)
My husband and I have to hold him to keep him from hurting himself acidentally or really doing some damage to the house at times. He gets so mad at us sometimes that he tries to hit, kick, or bite us and then the few times that he does then he is so sorry. He completely stops throwing the fit and makes sure that we are ok.
Sorry to go on so long, just get carried away and forget that sometimes people don't need to hear every detail. Plus, it helps me feel better somehow just getting it all off my chest. Thanks guys. :wave:
index.html
02-27-2005, 06:42 AM
Bubsmom, feel free to get it off your chest anytime you want! I may not be able to offer much help, but I'm always willing to listen...
Jennita
02-27-2005, 02:11 PM
Thanks for all the input. About him being any better since going on any of the meds, I honestly have to say no, no better. Not even a little.
My son's moods change so frequently. One minute he is doing fine, happy as a clam. Ten minutes later he is much madder than you would think an eight year old could ever be. Reward systems don't work. Or I should say don't work more than once in a while. It's like he will try and succeed and then later no matter what the prize, how much he would like it, how cool it would be he can't controll himself for even the shortest time to gain it. Then after he does get his reward you can't ever use that one again.
He is very demanding of everyone at all times. The only thing we've seen that the meds do is make him sleepy after he takes them so he takes a nap.
He is behind a grade as far as school goes. He is homebound schooled. A teacher comes to our house and works with him for one-two hours three times a week. He can't handle any more than that. When he does do his work he is very quick to learn something. He nearly always gets it all right. It's just getting him to do the work. He is mad the entire time. He is bored and won't do it if he has already done something like it. And if he's never done it he gets frustrated and confused and says that he is stupid and it is too hard. When he actually sits for a couple minutes to learn something new then it's not too hard and he finishes the page or lesson in no time flat.
He does not like to be alone. He hates to play by himself and will cry, yell, and scream if sister doesn't want to play or mom and dad are busy. When we or other children play with him or even other adults he gets mad and violent towards us almost immediately.
He is not good in groups. He hates the noise and is scared of the people. This happens in extended family groups also, not just with strangers. We have to keep blinds, curtains, or blankets over the window in his room as he is scared that bad people will hurt him or try to take him. Yet, to hear him talk, if someone were to kidnap him, he would beat them up and get away. They couldnt hurt him.
He does not like loud noises at all. In kindergarten at his christmas show he stood on the step things with the other students in his class and sang the songs with his hands over his ears the whole time. (He was in public school at that time.)
My husband and I have to hold him to keep him from hurting himself acidentally or really doing some damage to the house at times. He gets so mad at us sometimes that he tries to hit, kick, or bite us and then the few times that he does then he is so sorry. He completely stops throwing the fit and makes sure that we are ok.
Sorry to go on so long, just get carried away and forget that sometimes people don't need to hear every detail. Plus, it helps me feel better somehow just getting it all off my chest. Thanks guys. :wave:
That's ok, we don't mind hearing everything. It's just so sad. Well, if only we could have the absoulute answer for you.
OK, well, I think if it were me and my son, personally, I would try to go the med-free route....it sounds as though you really don't have any other option as he is, as you said, not been helped one little bit and now he is actually worse (seeing ghost people). I mean, can this course continue forever? I doubt it, something has to be different now.
You gave the meds a shot, a good shot, several years worth, several combos worth. It's not like you didn't try it their way. You have tried everything medicine had to offer. Now I guess it's time to decide if you need a change.
I hope you do read all the info from those other professionals, especially Dr.Breggin and Dr.Tracy. Maybe you will find some of the answers you need to guide you.
I hope you can find someone who will assist you if you do decide to wean him off the meds....and someone who might help him with some alternative treatments. I think there is also alot of infomation on the internet about alternative mental health if you search those words. The center I couldn't think of earlier is named Pfeiffer, but it's in Chicago, however, I think they have some articles of infomation floating around the net.
Please let us know what you decide and find. Keep us updated, ok? :angel:
My son's moods change so frequently. One minute he is doing fine, happy as a clam. Ten minutes later he is much madder than you would think an eight year old could ever be. Reward systems don't work. Or I should say don't work more than once in a while. It's like he will try and succeed and then later no matter what the prize, how much he would like it, how cool it would be he can't controll himself for even the shortest time to gain it. Then after he does get his reward you can't ever use that one again.
He is very demanding of everyone at all times. The only thing we've seen that the meds do is make him sleepy after he takes them so he takes a nap.
He is behind a grade as far as school goes. He is homebound schooled. A teacher comes to our house and works with him for one-two hours three times a week. He can't handle any more than that. When he does do his work he is very quick to learn something. He nearly always gets it all right. It's just getting him to do the work. He is mad the entire time. He is bored and won't do it if he has already done something like it. And if he's never done it he gets frustrated and confused and says that he is stupid and it is too hard. When he actually sits for a couple minutes to learn something new then it's not too hard and he finishes the page or lesson in no time flat.
He does not like to be alone. He hates to play by himself and will cry, yell, and scream if sister doesn't want to play or mom and dad are busy. When we or other children play with him or even other adults he gets mad and violent towards us almost immediately.
He is not good in groups. He hates the noise and is scared of the people. This happens in extended family groups also, not just with strangers. We have to keep blinds, curtains, or blankets over the window in his room as he is scared that bad people will hurt him or try to take him. Yet, to hear him talk, if someone were to kidnap him, he would beat them up and get away. They couldnt hurt him.
He does not like loud noises at all. In kindergarten at his christmas show he stood on the step things with the other students in his class and sang the songs with his hands over his ears the whole time. (He was in public school at that time.)
My husband and I have to hold him to keep him from hurting himself acidentally or really doing some damage to the house at times. He gets so mad at us sometimes that he tries to hit, kick, or bite us and then the few times that he does then he is so sorry. He completely stops throwing the fit and makes sure that we are ok.
Sorry to go on so long, just get carried away and forget that sometimes people don't need to hear every detail. Plus, it helps me feel better somehow just getting it all off my chest. Thanks guys. :wave:
That's ok, we don't mind hearing everything. It's just so sad. Well, if only we could have the absoulute answer for you.
OK, well, I think if it were me and my son, personally, I would try to go the med-free route....it sounds as though you really don't have any other option as he is, as you said, not been helped one little bit and now he is actually worse (seeing ghost people). I mean, can this course continue forever? I doubt it, something has to be different now.
You gave the meds a shot, a good shot, several years worth, several combos worth. It's not like you didn't try it their way. You have tried everything medicine had to offer. Now I guess it's time to decide if you need a change.
I hope you do read all the info from those other professionals, especially Dr.Breggin and Dr.Tracy. Maybe you will find some of the answers you need to guide you.
I hope you can find someone who will assist you if you do decide to wean him off the meds....and someone who might help him with some alternative treatments. I think there is also alot of infomation on the internet about alternative mental health if you search those words. The center I couldn't think of earlier is named Pfeiffer, but it's in Chicago, however, I think they have some articles of infomation floating around the net.
Please let us know what you decide and find. Keep us updated, ok? :angel:
Bubsmomalso
03-02-2005, 02:19 AM
Thank you all for your encouraging words and for letting me tell you all about it. Right now he is over the flu part and just stuck with the cold part of it all. Hopefully, he will feel completely better soon. Poor little guy.
The rest of us are dealing with it now. I knew we'd all get it sooner or later.
I'm going to take all of your advice and do a lot of research online and talk to his psychiatrist and therapist, as well as, his pediatrician about getting him off of some of these meds and to try a more natural approach. Also going to look for a new kind of doctor who uses natural remedies. Don't worry, we're not going to do this quickly or cold turkey. I'm going to take my time to find out as much as I can and do this all the right way.
I'll keep you updated as I find out what all we're going to do. Hope you all are doing well.
Hope and Love for all of you,
Bubsmomalso :angel:
The rest of us are dealing with it now. I knew we'd all get it sooner or later.
I'm going to take all of your advice and do a lot of research online and talk to his psychiatrist and therapist, as well as, his pediatrician about getting him off of some of these meds and to try a more natural approach. Also going to look for a new kind of doctor who uses natural remedies. Don't worry, we're not going to do this quickly or cold turkey. I'm going to take my time to find out as much as I can and do this all the right way.
I'll keep you updated as I find out what all we're going to do. Hope you all are doing well.
Hope and Love for all of you,
Bubsmomalso :angel:
Jennita
03-02-2005, 02:55 PM
Thank you all for your encouraging words and for letting me tell you all about it. Right now he is over the flu part and just stuck with the cold part of it all. Hopefully, he will feel completely better soon. Poor little guy.
The rest of us are dealing with it now. I knew we'd all get it sooner or later.
I'm going to take all of your advice and do a lot of research online and talk to his psychiatrist and therapist, as well as, his pediatrician about getting him off of some of these meds and to try a more natural approach. Also going to look for a new kind of doctor who uses natural remedies. Don't worry, we're not going to do this quickly or cold turkey. I'm going to take my time to find out as much as I can and do this all the right way.
I'll keep you updated as I find out what all we're going to do. Hope you all are doing well.
Hope and Love for all of you,
Bubsmomalso :angel:
Good luck. We are pulling for you, let us know! :angel:
The rest of us are dealing with it now. I knew we'd all get it sooner or later.
I'm going to take all of your advice and do a lot of research online and talk to his psychiatrist and therapist, as well as, his pediatrician about getting him off of some of these meds and to try a more natural approach. Also going to look for a new kind of doctor who uses natural remedies. Don't worry, we're not going to do this quickly or cold turkey. I'm going to take my time to find out as much as I can and do this all the right way.
I'll keep you updated as I find out what all we're going to do. Hope you all are doing well.
Hope and Love for all of you,
Bubsmomalso :angel:
Good luck. We are pulling for you, let us know! :angel:
hummingbirdkiss
03-03-2005, 10:56 PM
message deleted
Jennita
03-04-2005, 02:14 PM
Has your son been evaluated by a pediatric neurologist? Has he ever had an MRI or an EEG? Has he been medically evaluated for any physical conditions that might be causing his symptoms?
Sometimes a whole fresh look is needed. You might consider taking him somewhere else to get evaluated. I was misdiagnosed with Bipolar Disorder and treated for it for 12 years. I did not respond to the medications even though at one point I was on seven. Turns out that I do not and never had bipolar disorder. All that time what I really had was undiagnosed epilepsy.
The fact that nothing being done is working suggests that a piece of the diagnostic picture may be missing. Keep looking for answers and remember that it may need a fresh set of eyes to see them.
This is what I really hate about psychiatry. They never look towards a medical, nutritional, or outside cause. It's always the easy-fix chemical imbalance theory and here's some drugs.
These people have been in medical school yet they rarely act like it.
I think it's also very dangerous to overlook such severe conditions as epilepsy....good thing you are still here to tell your story!
Sometimes a whole fresh look is needed. You might consider taking him somewhere else to get evaluated. I was misdiagnosed with Bipolar Disorder and treated for it for 12 years. I did not respond to the medications even though at one point I was on seven. Turns out that I do not and never had bipolar disorder. All that time what I really had was undiagnosed epilepsy.
The fact that nothing being done is working suggests that a piece of the diagnostic picture may be missing. Keep looking for answers and remember that it may need a fresh set of eyes to see them.
This is what I really hate about psychiatry. They never look towards a medical, nutritional, or outside cause. It's always the easy-fix chemical imbalance theory and here's some drugs.
These people have been in medical school yet they rarely act like it.
I think it's also very dangerous to overlook such severe conditions as epilepsy....good thing you are still here to tell your story!
Bubsmomalso
03-08-2005, 01:28 AM
Hi all,
Just wanted to take time to answer and ask a couple questions.
Yes, he has had several appts. with a pediatric neurologist. Results all came back completely normal. He has had an MRI and an EEG. No physical problems that they can find.
My question is this. I've heard that something called the ketogenic sp? diet has done wonders for epilepsy and that some are finding it helpful for adhd and bi-polar. Have any of you heard this or of this or has anyone tried it? I figure if I find out how to do that, what harm could it do and who knows it might help. Hopefully, it is nothing crazy or dangerous to do though. Hopefully, it is just avoiding certain foods or getting plenty of other certain foods.
Anyway, he actually did great with his schooling today. No fits or anger outbursts. He did all of his work quietly and in no time at all. Here's hoping it goes that well on Wed afternoon.
My daughter's birthday was on Sunday so we were busy all weekend. School party on Friday, cleaning house up and making cake and goodies on Saturday, and party on Sunday. Her present from me, hubby, and brother was her getting her room made over so we also painted the room and shopped for accessories and coordinates on Saturday. She loves the room though so it was completely worth it. Whew, I'm still tired. LOL :jester:
Hope you all had a great weekend.
Just wanted to take time to answer and ask a couple questions.
Yes, he has had several appts. with a pediatric neurologist. Results all came back completely normal. He has had an MRI and an EEG. No physical problems that they can find.
My question is this. I've heard that something called the ketogenic sp? diet has done wonders for epilepsy and that some are finding it helpful for adhd and bi-polar. Have any of you heard this or of this or has anyone tried it? I figure if I find out how to do that, what harm could it do and who knows it might help. Hopefully, it is nothing crazy or dangerous to do though. Hopefully, it is just avoiding certain foods or getting plenty of other certain foods.
Anyway, he actually did great with his schooling today. No fits or anger outbursts. He did all of his work quietly and in no time at all. Here's hoping it goes that well on Wed afternoon.
My daughter's birthday was on Sunday so we were busy all weekend. School party on Friday, cleaning house up and making cake and goodies on Saturday, and party on Sunday. Her present from me, hubby, and brother was her getting her room made over so we also painted the room and shopped for accessories and coordinates on Saturday. She loves the room though so it was completely worth it. Whew, I'm still tired. LOL :jester:
Hope you all had a great weekend.
Jennita
03-08-2005, 02:23 PM
Hi all,
Just wanted to take time to answer and ask a couple questions.
Yes, he has had several appts. with a pediatric neurologist. Results all came back completely normal. He has had an MRI and an EEG. No physical problems that they can find.
My question is this. I've heard that something called the ketogenic sp? diet has done wonders for epilepsy and that some are finding it helpful for adhd and bi-polar. Have any of you heard this or of this or has anyone tried it? I figure if I find out how to do that, what harm could it do and who knows it might help. Hopefully, it is nothing crazy or dangerous to do though. Hopefully, it is just avoiding certain foods or getting plenty of other certain foods.
Anyway, he actually did great with his schooling today. No fits or anger outbursts. He did all of his work quietly and in no time at all. Here's hoping it goes that well on Wed afternoon.
My daughter's birthday was on Sunday so we were busy all weekend. School party on Friday, cleaning house up and making cake and goodies on Saturday, and party on Sunday. Her present from me, hubby, and brother was her getting her room made over so we also painted the room and shopped for accessories and coordinates on Saturday. She loves the room though so it was completely worth it. Whew, I'm still tired. LOL :jester:
Hope you all had a great weekend.
That sounds like such a wonderful present! The kind that will not be as forgotton as other things, what a great idea.
I am no expert on that diet, I did read a little. Seems it is a bit strict and has some controversy attached. I would read into it more if I were you, but you know, it is amazing to me that it is said that half of kids with seizures do respond to the diet! That is really something. It goes to show you how food plays such an important part in brain chemistry, doesn't it?
While you are researching it, you could try cutting down his sugars and simple carbs a bit to see if that has any effect too, and use nutrition rich foods and supplements.
The ketogenic diet might be something to try if just cutting down sugars and better diet don't work. More meals per day is known to cut down on irritability, they can be smaller meals than the normal but not skipped. My daughter's friend turns into a monster if she doesn't eat often, but she does have low blood sugar.
Look into the ketogenic diet and let us know if you try it, I'm curious about if it might work. It does seem very strict and controversial, however. I wonder if a milder version of it would work?(Aka cutting out sweets but still eating some complex carbs and mostly protein/fat foods?)
Anyway, food does have more power than people think when it comes to our brains. In fact, our neurotransmitters are actually created by protein synthesis....amino acides in proteins convert to various neurotransmitters.
For example, I've read that serotonin is simply tryptophan (amino found in dairy, meat, nuts) that converts to serotonin when complex carbs work to release it from the blood into the brain.
Just wanted to take time to answer and ask a couple questions.
Yes, he has had several appts. with a pediatric neurologist. Results all came back completely normal. He has had an MRI and an EEG. No physical problems that they can find.
My question is this. I've heard that something called the ketogenic sp? diet has done wonders for epilepsy and that some are finding it helpful for adhd and bi-polar. Have any of you heard this or of this or has anyone tried it? I figure if I find out how to do that, what harm could it do and who knows it might help. Hopefully, it is nothing crazy or dangerous to do though. Hopefully, it is just avoiding certain foods or getting plenty of other certain foods.
Anyway, he actually did great with his schooling today. No fits or anger outbursts. He did all of his work quietly and in no time at all. Here's hoping it goes that well on Wed afternoon.
My daughter's birthday was on Sunday so we were busy all weekend. School party on Friday, cleaning house up and making cake and goodies on Saturday, and party on Sunday. Her present from me, hubby, and brother was her getting her room made over so we also painted the room and shopped for accessories and coordinates on Saturday. She loves the room though so it was completely worth it. Whew, I'm still tired. LOL :jester:
Hope you all had a great weekend.
That sounds like such a wonderful present! The kind that will not be as forgotton as other things, what a great idea.
I am no expert on that diet, I did read a little. Seems it is a bit strict and has some controversy attached. I would read into it more if I were you, but you know, it is amazing to me that it is said that half of kids with seizures do respond to the diet! That is really something. It goes to show you how food plays such an important part in brain chemistry, doesn't it?
While you are researching it, you could try cutting down his sugars and simple carbs a bit to see if that has any effect too, and use nutrition rich foods and supplements.
The ketogenic diet might be something to try if just cutting down sugars and better diet don't work. More meals per day is known to cut down on irritability, they can be smaller meals than the normal but not skipped. My daughter's friend turns into a monster if she doesn't eat often, but she does have low blood sugar.
Look into the ketogenic diet and let us know if you try it, I'm curious about if it might work. It does seem very strict and controversial, however. I wonder if a milder version of it would work?(Aka cutting out sweets but still eating some complex carbs and mostly protein/fat foods?)
Anyway, food does have more power than people think when it comes to our brains. In fact, our neurotransmitters are actually created by protein synthesis....amino acides in proteins convert to various neurotransmitters.
For example, I've read that serotonin is simply tryptophan (amino found in dairy, meat, nuts) that converts to serotonin when complex carbs work to release it from the blood into the brain.
Bubsmomalso
03-13-2005, 02:45 AM
Hello all,
This past week hasn't been any worse than normal, but I do have one HUGE success to tell you about.
:D My son had a wonderful week at school. He has a homebound teacher that meets with him three times a week for an hour or a little more each time. Currently, I take him to his former elementary school after all the other kids are let out and the teacher meets us there and I sit outside the room while they work. Normally, he is given four or five worksheets to complete and a little reading work when we can get him accomplished. This usually is a fight the entire time. He gets frustrated, yells, refuses to do the work, throws fits, gets up and leaves the room repetedly, and so on. Not true this past week. :bouncing: He went in, did all of his worksheets calmly, collectively, and with NO problems. He even would read what he could read to his teacher. I am so proud of him. That was just absolutely wonderful for him and better than he has ever done since coming home from the hospital back in November 2004.
The only difference for this past week that might have affected his school time behavior and work was that on Thursday, the third of March his psychaitrist upped his Wellbutrin.
I honestly have no idea what to think. I don't know if it truly was the med increase or what. I'm so confused. I really want to get him off of the meds and see what we could do from there as far as getting him on some natural ways of dealing with all his problems. The psych. seems willing to go with whatever I feel is important and says that I am a very dedicated mother and that she wishes all patients and parents were as involved as I am. So that is good news, but what do you do when you try upping a med and it helps? Now, this coming Monday at school might be back to the same old, same old, but as his mom I am excited that he had a GREAT school week.
Does anyone know what I mean? Sometimes, in my head I just feel like or ask myself what am I gonna do? How will we ever make it through this? Will my son ever make it in this world or will the rest of his life and my family's be like this?
I feel for my husband and daughter so. My husband works third shift so that he is here if needed if my son has a fit or outburst that I can't handle alone. So naturally my husband sleeps during the day. Poor man is exhausted most all of the time. Maybe he gets a good three to four hours of continuous sleep a day. Then he works his butt off all night.
My daughter is a diabetic, type one, who has an extremely hard time keeping blood sugars under control even though we count and measure all food or drinks consumed. We check her sugars at least five times every day and a lot of the time more often than that. We see her specialist every three months. We talk on the phone with her nurse about her bloods and insulin amts every other week or so. And she is on an insulin pump also. I know I am not clueless as to how to do the right things for her as I have also been a type one for twenty three years and also go to the specialist every three to four months and am also on a pump.
Her behavior has gone downhill at an extremely fast pace since her brother first went into the hospital. She basically acts very rebellious, talks back, refuses to do as she is asked or told. Things like I put my parents through when I was around 14 or 15 until when I turned 18 and moved out. She has been in therapy ever since he went to the hospital and we keep her appointments religiously.
I would like to put it all towards her being a pre-teen, but there has to be more than that. I know that dealing with her brother has to be very hard on her and I hurt for her so much, but what else can my husband and I do? We do things that are just for her and just with her so that she feels like she is getting the attention she wants and needs and it is just not doing any visible thing for her that I can tell. She has started doing not so good in school behavior and grade wise and that has never been a problem before. Now the school is wondering if she might be adhd and so is her therapist.
I don't believe that, although I could be wrong. But I think she just has so much to deal with every day that it all is affecting her behavior. Any one with an opinion on that one?
Oh yeah, I looked into the ketogenic diet and it didn't give quite the outlook I was hoping for with regards to my son so I did a search for diets specific for add and adhd kids and found one that seems very duable. Going to talk to psych about that cause the food part is minor, but it also gave a complete list of natural supplements or vitamins to use to medicate and maybe even actually fix the problems in the brain that result in add or adhd. (Instead of masking the symptoms, which is what I feel the meds try to do.)
Anyway, sorry for going on so long just had to vent. It gets so overwhelming sometimes. Thanks for listening. Hope you are all doing well.
Love and hugs to all of you,
:angel:
This past week hasn't been any worse than normal, but I do have one HUGE success to tell you about.
:D My son had a wonderful week at school. He has a homebound teacher that meets with him three times a week for an hour or a little more each time. Currently, I take him to his former elementary school after all the other kids are let out and the teacher meets us there and I sit outside the room while they work. Normally, he is given four or five worksheets to complete and a little reading work when we can get him accomplished. This usually is a fight the entire time. He gets frustrated, yells, refuses to do the work, throws fits, gets up and leaves the room repetedly, and so on. Not true this past week. :bouncing: He went in, did all of his worksheets calmly, collectively, and with NO problems. He even would read what he could read to his teacher. I am so proud of him. That was just absolutely wonderful for him and better than he has ever done since coming home from the hospital back in November 2004.
The only difference for this past week that might have affected his school time behavior and work was that on Thursday, the third of March his psychaitrist upped his Wellbutrin.
I honestly have no idea what to think. I don't know if it truly was the med increase or what. I'm so confused. I really want to get him off of the meds and see what we could do from there as far as getting him on some natural ways of dealing with all his problems. The psych. seems willing to go with whatever I feel is important and says that I am a very dedicated mother and that she wishes all patients and parents were as involved as I am. So that is good news, but what do you do when you try upping a med and it helps? Now, this coming Monday at school might be back to the same old, same old, but as his mom I am excited that he had a GREAT school week.
Does anyone know what I mean? Sometimes, in my head I just feel like or ask myself what am I gonna do? How will we ever make it through this? Will my son ever make it in this world or will the rest of his life and my family's be like this?
I feel for my husband and daughter so. My husband works third shift so that he is here if needed if my son has a fit or outburst that I can't handle alone. So naturally my husband sleeps during the day. Poor man is exhausted most all of the time. Maybe he gets a good three to four hours of continuous sleep a day. Then he works his butt off all night.
My daughter is a diabetic, type one, who has an extremely hard time keeping blood sugars under control even though we count and measure all food or drinks consumed. We check her sugars at least five times every day and a lot of the time more often than that. We see her specialist every three months. We talk on the phone with her nurse about her bloods and insulin amts every other week or so. And she is on an insulin pump also. I know I am not clueless as to how to do the right things for her as I have also been a type one for twenty three years and also go to the specialist every three to four months and am also on a pump.
Her behavior has gone downhill at an extremely fast pace since her brother first went into the hospital. She basically acts very rebellious, talks back, refuses to do as she is asked or told. Things like I put my parents through when I was around 14 or 15 until when I turned 18 and moved out. She has been in therapy ever since he went to the hospital and we keep her appointments religiously.
I would like to put it all towards her being a pre-teen, but there has to be more than that. I know that dealing with her brother has to be very hard on her and I hurt for her so much, but what else can my husband and I do? We do things that are just for her and just with her so that she feels like she is getting the attention she wants and needs and it is just not doing any visible thing for her that I can tell. She has started doing not so good in school behavior and grade wise and that has never been a problem before. Now the school is wondering if she might be adhd and so is her therapist.
I don't believe that, although I could be wrong. But I think she just has so much to deal with every day that it all is affecting her behavior. Any one with an opinion on that one?
Oh yeah, I looked into the ketogenic diet and it didn't give quite the outlook I was hoping for with regards to my son so I did a search for diets specific for add and adhd kids and found one that seems very duable. Going to talk to psych about that cause the food part is minor, but it also gave a complete list of natural supplements or vitamins to use to medicate and maybe even actually fix the problems in the brain that result in add or adhd. (Instead of masking the symptoms, which is what I feel the meds try to do.)
Anyway, sorry for going on so long just had to vent. It gets so overwhelming sometimes. Thanks for listening. Hope you are all doing well.
Love and hugs to all of you,
:angel:
Jennita
03-13-2005, 03:26 AM
Sometimes upping a dosage can provide a lift to the situation as the stronger dose can overwhelm brain function temporarily, but unfortuanately it may not last as tolerance may build to the new dose later on. Higher dosage also means higher risk of side/adverse effects, on a more severe level.
But at least you got a break for now. Very sorry so many things are going so hard for you, it sounds like you have such a burden to carry. Hopefully, somehow you will be able to see what course to take. There may be a chance meds will somehow help after all, for awhile anyway. I wouldn't want to keep him on meds, but you are his mom not me so you will have to decide this ultimately.
I have heard some success stories with meds, although I'm not sure how others define success or whether or not other things happen that are accepted by those people which would maybe not be acceptable to others in the same situation.
It's hard, I know, to figure out what is best....hopefully something will happen that tells you what course to take. At least either way, you do know both sides of this med situation when some people do not, so you can look out for the signs.
If meds will ultimately help him and continue to help him without harming him, I would say use them. However, I have very little confidence that will be the case....but, I've learned in life to never rule out anything completely!
So, perhaps it would not hurt to see if he continues to be better under this new attempt. If he does, perhaps all will end up well, but if not, the drugs can always be tapered later anyway.
Good luck with whatever decision you make...
But at least you got a break for now. Very sorry so many things are going so hard for you, it sounds like you have such a burden to carry. Hopefully, somehow you will be able to see what course to take. There may be a chance meds will somehow help after all, for awhile anyway. I wouldn't want to keep him on meds, but you are his mom not me so you will have to decide this ultimately.
I have heard some success stories with meds, although I'm not sure how others define success or whether or not other things happen that are accepted by those people which would maybe not be acceptable to others in the same situation.
It's hard, I know, to figure out what is best....hopefully something will happen that tells you what course to take. At least either way, you do know both sides of this med situation when some people do not, so you can look out for the signs.
If meds will ultimately help him and continue to help him without harming him, I would say use them. However, I have very little confidence that will be the case....but, I've learned in life to never rule out anything completely!
So, perhaps it would not hurt to see if he continues to be better under this new attempt. If he does, perhaps all will end up well, but if not, the drugs can always be tapered later anyway.
Good luck with whatever decision you make...
Jennita
03-13-2005, 03:11 PM
and I forgot to mention, I'm very sure that having such a terrible disease as diabetes plus the obvious stress of life situation you all in in has to surely effect your daughter's moods...I mean, how could it not??
Blood sugar fluctuations can alter moods as well. My uncle had type 2 diabetes and when his sugar level wasn't right, my aunt said he would get extremely irritated and mad at every little thing.
I don't know a whole lot about diabetes; we do have a friend with it and he said 1/4 tsp. cinnamon 2X a day has actually been found in studies to help keep the levels better....this is not instead of medication but rather an additional helpful thing they've recentely discovered. Ask your doctor, of course!
Blood sugar fluctuations can alter moods as well. My uncle had type 2 diabetes and when his sugar level wasn't right, my aunt said he would get extremely irritated and mad at every little thing.
I don't know a whole lot about diabetes; we do have a friend with it and he said 1/4 tsp. cinnamon 2X a day has actually been found in studies to help keep the levels better....this is not instead of medication but rather an additional helpful thing they've recentely discovered. Ask your doctor, of course!
Bubsmomalso
03-14-2005, 12:46 AM
Thank you so much for the reply and the info on cinnamon. I have never heard of that yet, until you mentioned it, but I will definately ask diabetic nurse and doc about it sometime this week. Also, thanks for the "good luck"
Hope everyone is well,
Hope everyone is well,