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    Old 02-21-2005, 10:28 PM   #1
    Bubsmomalso
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    Can anyone help me?

    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

     
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    Old 02-22-2005, 05:33 AM   #2
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    Re: Can anyone help me?

    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

     
    Old 02-22-2005, 05:58 AM   #3
    Ruth6:11
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    Re: Can anyone help me?

    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

    Last edited by Ruth6:11; 02-22-2005 at 06:00 AM.

     
    Old 02-22-2005, 07:56 PM   #4
    Bubsmomalso
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    Re: Can anyone help me?

    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.

     
    Old 02-22-2005, 09:55 PM   #5
    kerry1
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    Re: Can anyone help me?

    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.

    Last edited by kerry1; 02-22-2005 at 10:01 PM.

     
    Old 02-22-2005, 11:29 PM   #6
    Bubsmomalso
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    Re: Can anyone help me?

    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.

     
    Old 02-23-2005, 11:21 AM   #7
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    Re: Can anyone help me?

    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.

     
    Old 02-23-2005, 04:32 PM   #8
    kerry1
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    Re: Can anyone help me?

    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.

     
    Old 02-23-2005, 08:19 PM   #9
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    Re: Can anyone help me?

    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
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    Last edited by Solstice1221; 02-23-2005 at 08:22 PM.

     
    Old 02-24-2005, 11:15 AM   #10
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    Re: Can anyone help me?

    i have also seen some evidence of this. read up on magnesium. it may help you. it cannot hurt.

     
    Old 02-24-2005, 11:49 AM   #11
    Jennita
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    Re: Can anyone help me?

    Quote:
    Originally Posted by Bubsmomalso
    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...

    Last edited by Jennita; 02-24-2005 at 11:50 AM.

     
    Old 02-24-2005, 02:07 PM   #12
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    Re: Can anyone help me?

    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
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    Old 02-24-2005, 03:21 PM   #13
    kerry1
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    Re: Can anyone help me?

    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.

     
    Old 02-24-2005, 05:20 PM   #14
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    Re: Can anyone help me?

    kerry1,

    I'd agree about being very careful, also. Especially with a child.

    ~Katalina
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    Old 02-24-2005, 07:16 PM   #15
    Jennita
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    Re: Can anyone help me?

    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....

     
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