OT-Heath issue and disabled son going into a residential program

I am going through a lot right now.  I started a new job (yeah!) about 2 weeks ago which I love.  I am a parent support for parents of special needs children. So I am getting used to working again and taking care of my family (I've been out of work for a year and a half after I got laid off from my last job).  I recently found out that I have a rare form of colitis called Collagenous Colitis which was discovered after I had a colonoscopy and the result of the biopsies of the tissue samples that my GI specialist took.  I go today for a follow up appointment with him and find out what treatment he is going to give me.  Everything I've read online says its a combination of diet changes and medication.  One treatment option I'm totally against is steriods.  I didn't work this hard to lose 114 lbs to gain a lot of it back as weight gain is a huge side effect from steroids.  And my colon is not inflamed at all, looks normal in the colonoscopy.  I would like to add that this is a genetic diagnosis and had nothing at all to do with my RNY surgery. 

My son Jake who has had numerous hosptializations in psychiatric facilities over the last 3 years (7 in 3 years) is currently in-patient again at an accute facility (the best in Boston thank God) and the doctors and therapist have recommended a residential program for him so he will not be coming home.  I am coming to terms with this recommendation although am very torn about it.  I have 4 other children in addition to Jake and I have to be concerned for their safety as well.  Jake has many diagnoses (Bipolor, PDD, ADHD and Sensory Intergreation Disorder) and is on many medications but they are not going to be the answer for him.  He is extremely disregulated and violent in the hospital and has been doing some very disturbing behavior (basically regressed back to a 2 year old when he is in crisis) and they are unable to implement a behavior plan because he is so disregulated.  He is only 8 years old so this is very hard for me as a mom but I know that this is the best option for Jake.  I know there will be a grieving process for me and hopefully my therapist can work through that with me.  I have a long road ahead of me and hopefully there will be no opposition from the school district to his residential placement.  As soon as letters and records are compiled, I need to call an emergency IEP meeting to get the ball rolling on his placement.  If the school does give me any trouble, I already have access to an advocate (through my new job) and will get her to fight for jake's rights. 

Please keep Jake in your prayers if you believe in that and hopefully everything will go smoothly.

Thanks for letting me vent!

Mallisa

Prayers sent your way.  For your health, your son, and for finding peace with his placement.  My dd (9) has epileptic encephalopathy - so I can imaginne your pain & heartbreak.  Please take care of yourself.

{{{HUGS}}}
Laura

I'm sorry for all you're going through. I too have 3 special needs children, some mildly, one severe. Two have adhd, hemophilia and severe asthma. The third has Cerebral palsy, and status epilepticus epilepsy. Meaning he has clusters of seizure activity, sometimes lasting longer than 90 minutes. We always break them asap, but some require really heavy duty meds. Types you can only get in the hospital.

I'm praying for ya'll.

teri

Sorry you are going through this. My son is 10 and has ADHD, ODD, Anxeity and a Mood Disorder. The Mood Disorder i believe is really bipolar, he has those symptoms but the phsyc. hasnt made that a true diagnosis yet.  He does have an IEP with his school. And yes if the school will not do what you "need" them too Id find a way to fight for his rights as a student. All school staff doesn't really know how to handle special needs kids. I wish they had to do special training for kids like ours.
Tre' had an issue this year and the Vice Princpal called and was telling me about the situation and I told him we were in the process of adjusting meds, he told me thatss what Tre' had told him, but Tre' knew better than to talk back to the coach/gym teacher. Um when adjusting meds you don't know whats going to happen or if the adjustment is going to work. The VP told me Tre' knew better. Needless to say I was pissed. When Tre' acts up it's like he is in his own lil world and doesnt realize what he is doing until after it is done and will say hes sorry.
May I ask what a residential program is ?
And Tre' too has been hospitalized once when he was 7 maybe 8 he was in the 1st grade. If this VP had been at the school when we had those major issues he would have died, lol . Thats before his ODD was diagnosed and he didn't have meds for that....
I hope you dr. will work with you so you don't have to take steroids. I'm on Seroquel XR and it has made me gain some weight and it sucks ! My dr. is weaning me off it and I hopeing to stop this drug completly and try something else. My son is also on this med. for his moods and has gained about 45 pounds since last May. And weightgain is a side effect. It is working right now and we are keeping him on it. We may adjust it when school is out for summer break so he won't be disturbing his class mates. Cause I know medicine adjustments can be hard to go through. And you have to keep right up on them too.
Will have your son and you in my thoughts and prayers !
Holli

I'm sorry for all you're going through.  My nephew who is severely emotionally disabled lived with me for about five months recently and it was so difficult, I can't imagine dealing with that with my own  child for years and years.  I hope the residential program helps him.  I really thought that was what my nephew needed but we just weren't able to get it for him.  I sure will keep you both in my prayers.

 Hugs to you!  I have a 7 yr son with Autism, PDD-NOS, OCD, ADHD.  (almost the whole alphabet!!)  I truly understand and feel for you.  As a matter of fact just yesterday, I had a 3 hr IEP meeting discussing what his placement is going to be for next school year.  The school he is in just can't handle him.  It breaks my heart, just having to sit there listening to a room full of people telling me things that I already know...and live with on a daily basis..  I think that the Principal and VP have my phone # on speed dial!!  I receive a letter, email, or phone call almost daily... telling me he did something...   I hope that this new placement will work out and be to his benefit.  Know that you are not alone... hang in there.

I have not had my surgery yet, and I'm worried how I'm going to be able to physically handle him post-op for a while.  He'll be 8yrs in August and already weighs 110lbs!!

~Chrissy