Monday, July 12, 2010

Rough Nights

Sam has had some rough nights over the past couple of weeks. I think he has built up a tolerance to the melatonin b/c he is waking at around 3am. He refuses to stay in his bed and he works himself up into a frenzy - jumping, running, stomping, flapping, and laughing. He crashes at around noon and sleeps a bit. I, of course, have consumed so much coffee by that point I can't nap myself.

I don't think medication is working for Sam. I always think I see something at the beginning of each new intervention but I think it is just because I am looking so hard I find things to hold on to. I am taking Sam back to the neurologist this week to see what the next step should be. I assume we will wean him off (shouldn't take long since he is on such low doses). I would like to try other options but she may tell me there are none. I know WANTING to medicate my child may sound funny but you have to realize that he cannot function in the world. His behaviors are not manageable. We have done countless hours of behavioral interventions with very little to show. He is still mostly non-verbal, pretty hyperactive and extremely impulisive/compulsive. I had a couple of therapists come look at him last week and they both agreed that there is more intellect in there than we can see but his stims and microsecond attention span make simply functioning impossible. They both felt that if there was any way to reduce his level of distraction, he would be able to do much more. I am not delusional - I don't think I have a little Einstein hiding in there but I do think he is capable of more. That is why I want to try more meds. My biggest fear is that he will still be like this when he is five feet or six feet tall. How could I possibly manage him? People tell me not to look too far into the future because things may change but his progress is sooooooooo slow and he is soooo tall that I don't think my fears are baseless.

I hope the neurologist has some options for us.


Stranded said...

I dont know what the hyperactivity in your son looks like or when and how it happens.

The way we have brought down Khaled's physical impulsiveness a very tiny fraction is by doing repetitive regualtory patterns with him and trying day and night to come up with ways to reduce his overall anxiety.

His attention span is still microsecond, he is still very anxious and we see now his anxiety coming out in other ways (replacing his physicality) - so now instead of running away, he tries to deal with his anxiety around a person/activity/ucnertain situation by trying to control it.
And he has increasing routines and rigidity which when not followed lead him to literally explode and become a mess.

IN the end of the explosion he is an emotional wreck and crying.

It is not that he is "controlloing" or "hyperactive" but extremely stressed and anxious.

This has taken me a year.

I will post some videos on my blog and maybe do posts around uncertainty to make myself clearer.

KAL said...

The timing of your post is amazing. I wish I could say that I have an answer for you, but the sad fact is that I'm in the same boat. It is so, so difficult. We are seeing John's neurologist tomorrow to talk about different medications. I'd be interested to hear what ones you've already tried, our neurologist has mentioned risperdal but it seems like such a heavy-duty drug for a 5-year-old. Email me if you'd like kal.twins (at) In any event, wishing you sleep soon.