Can anyone help me? - Mental Health Message Board

Bubsmomalso · 02-21-2005, 11:28 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

kiehn · 02-22-2005, 06:33 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

Ruth6:11 · 02-22-2005, 06:58 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

Bubsmomalso · 02-22-2005, 08:56 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.

kerry1 · 02-22-2005, 10:55 PM

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.