New mom, and comments on meds
Moms View Message Board: Parenting Children with Special Needs: New mom, and comments on meds
Hi I am a new mom to this board. I have 2 children, one who is NT and the other with Autism and Bipolar.
My special needs child is 12yrs old and is 5.5 years older than his brother.
I often feel like no matter what we do, we never really figure him out. He can be very violent towards us and his younger (and smaller brother) and so at this time after many years of dealing with this, we are considering a group home.
Our son was just on a series of medication failures and what I wanted to relate is the uniqueness of all our kids. In June all his meds suddenly failed and he was manic and violent for 2 and a half weeks. IT WAS REALL SCARY. We were looking at 5150 every day, and could get no help from our case manager, because she was out on maternity leave. We also found out that the crisis homes in our area, are closed due to lack of funding. Recently, we tried a series of meds (5 meds) which all failed. Trileptal made him manic, Mellaril which made him psychotic, Thorazine, from which he got severe Tardive Dyskenesia, and his speech became so slurred he could not be understood. Seroquel which he was allergic to, and from which he got severe Tics, severe Tardive Dyskenesia and then his larynx closed up when we tried to discontinue it. He was so agitated over this that he tried to bit his pinky was slamming the table with his fists and wanted me to cut off his finger.
I had to give him benadryl every time I gave that to him during the week of tapering from it, so he would not scratch the hives that were all over his back, chest and arms. ugh!!!!!
Now we are on Gabitril and his tics are going away, and he seems better, the veil between reality and fantasy (which has always been very thin) seems to be fading even more. I don't think this is due to the meds, but it is also hard to get him to do anything, even though he still has energy and all.
What is curious is that a friend of his has the same dx but did fantastic on Seroquel. He also had a tough time on Risperdal, while we did very well on that, except it stopped working after a while and he gained a lot of weight.
He is also now very sensitive to food and will not eat breakfast anymore and is loosing weight. This is good, since he had gained weight due to Zyprexa. I have come to the conclusion though that if something works for our son's friend it won't work for us, and if it works for us, it won't work for him. I think our chemistry is completely opposite.
Any thoughts????
Also, having an extremely hard time finding a group home that will accept him. Any ideas???
Please know our decision to do that is very painful, but after our younger child ended up in the ER last weekend (his brother hit him in the head with a wooden boomerang on purpose and still thinks that was okay). We realized we have to do this for his physical and mental health.
Thanks for listening.
piebear
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First of all, lots and lots of hugs. My oldest son is ADHD and Bipolar. Aspergers has been mentioned several times (among other things), but no official dx. When Robin was dx'd bipolar three years ago, we played the med game for almost a year before we found something that worked for him. We'd been adjusting his ADHD meds prior to that and nothing was working (did that for almost 2 years). Something would work for a couple weeks and then quit working all of a sudden. It was like his body adjusted. I tell people Robin's like the Borg. He adapts and resistance is futile.  We did try several of the meds you mentioned and they didn't work for us either. Abilify was our wonder med. Robin's been on it for about 2 years and we've adjusted it a few times but it's still working for us. He's also on lithium. Believe me, he has his moments but most of the time he's pretty stable. Are there any hospitals near you that have room for your ds? We have a really good children's psych hospital in our city, but they're usually full. If they are then they send them to the state hospital in Pueblo. My son's never been to either, but a friend's has several times and it's always been good for him. Have you checked out bpkids.org? There's a lot of good info on there. I'm sorry you're having such a hard time with your son. I have a younger son also that Robin will lash out at, but so far he hasn't hurt him. Lots and lots more hugs. Post here or email me if you want to talk. cathylizme at falcon broadband dot net (no spaces and formatted correctly) There are some moms on here with autistic kids. They'll probably be of help to you in that aspect. More hugs...
Hi Cat:
Thanks for all your warmth and support. I have been on bpkids.org and also we did Abilify. Seemed to work for awhile and then did not. Unfortunately, our psychiatrist had us use it as a PRN which REALLY did not work. We have also done Lithium and Thorazine. The Lithium seemed to really effect his appetite and so suddenly lots of foods he used to like he did not.
I am sooo with you on the borg analogy. It seems like things work... for a while and then they don't With us, though if the reaction is bad it's immediate and if it's good it's immediate. That has the negative side that the bad can be very scary.
Our little guy has 2 scars on his face from his brother, one where he gauged the side of his face with his finger nail and missed his eye by a hair. The other with a pencil which went from the bottom eyelid down his cheek to his neck. I had to rush him to the doctor for that one, and the scar still has not healed. It looked ghastly for months and I am still applying vitamin E to it every night. The thing is, and I am sure you know this, when they get upset, they will lash out with anything near by, and so the boomerang could have been a rock, (he has a rock collection) a spinning top, or anything. During our summer weeks of mania I took out all the breakable things in his room and heavy stuff because he was throwing things at us.
We do have a psych unit, but it is 45 miles away and I found out that if I take him to the ER you need an appointment and if he gets there and there is no bed, then they will transport him to another hospital which is about 60 miles away. Not good.
So, I am hoping we can get through things until I find a placement for him.
Again, though thanks for listening and being there.
Piebear
I don't have any experience and don't have any suggestions.
Just wanted to say {{{{{{HUGS}}}}}}}...
I know the support from this board can help a lot even if it is just for venting.
Tarable:
Thanks for your support and kindness. IT IS SO APPRECIATED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I cannot imagine having to send a child away to a group home, but I know making this decision was not easy and is very painful. It sounds like your family has done everything possible and tried every avenue to avoid taking this step. I will keep you all in my prayers.
Ginny and all:
Thanks so much for all your support. We are still trying to find a home and that is now our big issue. It seems like no one will accept him, or other factors come into play. It is an extremely painful decision to make, but it seems like we are just getting through each day the best we can, and so every day I just thank the powers that be, that we got through that one.
I had an appointment this morning to see a new group home which was near us, only to have it cancelled, and then find out half an hour later, that the owner is moving all her group homes to Sacramento (which is about 70 miles from us). The other home we were considering is full, and so now our only options are homes which are about 45 miles away, or one which is closer but out of our school district, which means either way, our son could loose his school placement as well.
I am just aghast at all of this. Our new case manager through Regional Center (a state program for kids with developmental issues) is great, but she cannot invent programs which do not exist.
I think all we need at this point are prayers and some kind of miracle.
Thanks everyone for listening.
You wrote this awhile ago, so I'm not sure how things are going. It sounds like you are really in crisis. If things are still this bad, honestly, if I were you, I would take him to the ER. BTDT. My son is not BP but we have LOTS of other issues. He's taken a lot of the meds you have mentioned too- currently my son takes Seroquel and Wellbutrin. It also sounds like you need a better psychiatrist. Is he seeing one regularly? If so, maybe you could call and explain the urgency and the psychiatrist would admit him. I'm not sure a group home is appropriate at this point. It sounds like the meds need to be regulated big time!
Good luck. Let us know how you are doing!
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