buddy
New Member
Ok, Q is not huge, but he is now 5 feet and weighed 107 at the doctor today (had to go he said his heart hurt, I think it is heartburn but not sure so had to check).
He is averaging 1.5 to 2 lbs per week. I have to get his height from d/c at hospital and the last two doctor appts to see if height is changing enough that this is ok, because even if he grows 6 more inches over the next 6 months, 48 more lbs would not be healthy.
At what point is a weight increase too much? is the bmi you need to look at?
He has always been so little that I have never had to worry. I am ok if it is growth spurt stuff, but if the medications are causing this, not ok with me...I dont think there is enough evidence this is working at this point. But he has only been on this dose for 4 weeks. They said we should see benefit in a couple but not for sure know until 6 weeks.
I feel like he still gets agitated at times.... usually associated with something physical that sets it off like the rash, tired, hunger... but if the hunger is being caused by the medication then that would be eliminated without it....
A difference from the lamictal reaction is he will act like he is really mad, hold his fist etc. but there has not been any except for one day when he had the rash terribly and could nto keep from falling apart all day. That was the day too that we had the IEP meeting and the public health nurse came so he was super stressed. Compared to when he was on and coming off the lamictal, that is huge. But his agitation does not seem less. I guess that is better than aggression but I dont know.
so I have been doing lots of research on medications in brain injury for agitation and aggression. seems the most successful medications are Ritalin and Clonidine.... well well, what do you know.... those are the main ones I always thought worked. the studies I found said that in brain injury, clonidine or any beta blocker medication used for this only has worked in large doses, again.... exactly what is going on with Q.
Says lithium in a brain injured person with no mania has not been shown to work, but that was only one research review and I think it was a limited number of studies.
Another said that in prolonged aggression lithium worked dramatically for 5 out of 6 of the patients. But he didn't have prolonged aggression, it got dramatically worse after the lamictal, but the only times he had more than brief times more than once month or so...even less most of the time.... it was when he grew and we had to increase the clonidine or ritalin and that fixed everything...would completely stop for a long time again.
It stinks so bad that he is at such high doses that this is not an option for him anymore.
What to do???? I am sure there is not an easy answer... research sure stinks for this. When it is not a brain chemistry thing... seems to be so different.
I am glad we are going off the prozac. the only ssri I found positive research on was zoloft. That was in adults, but not huge success.
anti psychotics and atypical anti psychotics were again not shown to be so great for many....
well, we saw that for Q too and it actually was ugly for him to be on them. AFter seeing those kids on 20/20 I am not thrilled to try them again anyway.
I sure hope that the extra therapies I am trying will help.
I posted on FB maybe only...not here, if so I am sorry for saying this twice:
Courage center called me back, the counseling part. they asked if I would be ok with Q working with therapy dogs. What was so strange about that was that I had in my search engine at that very moment.... therapy dogs for children with autism.....
That was weird.
thanks for letting me ramble...
He is averaging 1.5 to 2 lbs per week. I have to get his height from d/c at hospital and the last two doctor appts to see if height is changing enough that this is ok, because even if he grows 6 more inches over the next 6 months, 48 more lbs would not be healthy.
At what point is a weight increase too much? is the bmi you need to look at?
He has always been so little that I have never had to worry. I am ok if it is growth spurt stuff, but if the medications are causing this, not ok with me...I dont think there is enough evidence this is working at this point. But he has only been on this dose for 4 weeks. They said we should see benefit in a couple but not for sure know until 6 weeks.
I feel like he still gets agitated at times.... usually associated with something physical that sets it off like the rash, tired, hunger... but if the hunger is being caused by the medication then that would be eliminated without it....
A difference from the lamictal reaction is he will act like he is really mad, hold his fist etc. but there has not been any except for one day when he had the rash terribly and could nto keep from falling apart all day. That was the day too that we had the IEP meeting and the public health nurse came so he was super stressed. Compared to when he was on and coming off the lamictal, that is huge. But his agitation does not seem less. I guess that is better than aggression but I dont know.
so I have been doing lots of research on medications in brain injury for agitation and aggression. seems the most successful medications are Ritalin and Clonidine.... well well, what do you know.... those are the main ones I always thought worked. the studies I found said that in brain injury, clonidine or any beta blocker medication used for this only has worked in large doses, again.... exactly what is going on with Q.
Says lithium in a brain injured person with no mania has not been shown to work, but that was only one research review and I think it was a limited number of studies.
Another said that in prolonged aggression lithium worked dramatically for 5 out of 6 of the patients. But he didn't have prolonged aggression, it got dramatically worse after the lamictal, but the only times he had more than brief times more than once month or so...even less most of the time.... it was when he grew and we had to increase the clonidine or ritalin and that fixed everything...would completely stop for a long time again.
It stinks so bad that he is at such high doses that this is not an option for him anymore.
What to do???? I am sure there is not an easy answer... research sure stinks for this. When it is not a brain chemistry thing... seems to be so different.
I am glad we are going off the prozac. the only ssri I found positive research on was zoloft. That was in adults, but not huge success.
anti psychotics and atypical anti psychotics were again not shown to be so great for many....
well, we saw that for Q too and it actually was ugly for him to be on them. AFter seeing those kids on 20/20 I am not thrilled to try them again anyway.
I sure hope that the extra therapies I am trying will help.
I posted on FB maybe only...not here, if so I am sorry for saying this twice:
Courage center called me back, the counseling part. they asked if I would be ok with Q working with therapy dogs. What was so strange about that was that I had in my search engine at that very moment.... therapy dogs for children with autism.....
That was weird.
thanks for letting me ramble...