We were a little leery at first on the Seroquel; Jackson was still waking up in the middle of the night. The first few days on it was also taking us around an hour and a half to get him to sleep. After 3 nights we emailed our FXS doctor because the half dose didn’t seem to working and we forgot to ask how long we needed to give it to see positive results. She said with the results he is having we can bump him up to a full dose and we should see good results in a few days. She also said that some of the behaviors will also decrease after a week. I will say so far so good now that he is on a full dose. We got 2 nights in a row, Sunday and Monday, without waking up in the middle of the night. Unfortunately Monday night I played softball and re-injured my shoulder enough that it kept me awake all night. We have also eliminated Jackson’s nap time, which I think is helping him stay asleep. Nap time has been a struggle for awhile now anyway and he doesn’t seem to slow down in the middle of the day without one. From time to time he will take a little power naps in the car, but they don’t amount to much at all.
His behaviors haven’t increased, but they also haven't gone away. The therapists are hoping that if we can find something he will chew on; it might decrease sticking his fingers down this throat. Sara is crafting something for him to chew on. He used to do really well with the “P’s and Q’s”, but now he won’t wear them around his neck and for him to hold one without throwing it is impossible. We are still working on the head banging, but it isn’t as frequent as it was on the Clonidine. Sara has been giving him deep pressure rubs and I have been playing rough and tumble and the combo of the two seems to be helping a lot. So the Seroquel so far has been very promising.
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