Dr. Ave Lachiewicz discussed behaviors and treatments a few weeks ago at the behavior workshop that we attended. One of the topics in her discussion was based on medication. Everyone is wired differently, so sometimes you have to try many different types of medication before you find the right one, or mix to fit your needs. She talked about the several different medications that have shown great results with children with Fragile X. It was good to see the different medicines we have tried with Jackson show up on the list and was really interesting to see how they are classified and what they are used to treat in Fragile X patients. I think I said this before, but I had a really hard time in the beginning with starting Jackson on medication and the main reason I was against it was because he can’t tell us how it makes him feel. After going weeks without sleep and going to Chicago in May, I finally agreed that medicine might be what is best for him. Seeing this presentation also helped eased my feelings.
Jackson has been doing really well on Trazodone, with the exception of waking up at least once in the middle of the night, usually around 2 AM. Unlike before, we are able to get him back to sleep, but only in our bed. He will have nothing to do with his crib. We are working with our ABA therapists and thinking it is close to upgrade to a big boy bed. We also thought we should hit up or FXS doctor and see if there is an extended release pill in the same family of Trazodone. There is an extended release, but the pill cannot be crushed or dissolved and Jackson can’t swallow pills just yet, so our doctor suggested a different medication in the same family as the Tenex called Clonidine. She thinks it will help with overstimulation. So we tried Clonidine and started seeing the same negative results we saw with the Tenex. The head banging increased, he wasn’t his morning self and just seemed like a zombie all day. It was also difficult to get him to sleep and he was very restless which meant he tossed and turned all night not sleeping at all. So we reported this right away after three days to the doctor. No more alpha agonists types of medications for Jackson.
We are now trying Seroquel, it is a different family as the Trazodone, but has some of the same mechanics to help with sleep. Jackson is back to himself during the morning and daytime, which is great. So far on the sleep front it hasn’t been giving the results that we would like. He has only been on it two nights and both nights it has taken over an hour to get him to sleep. He is waking up around 11:30 -12, so it isn’t keeping him a sleep and he seems super restless throughout the night. The doctor said if we do not get good results, we can go back to the low dose of Trazodone. So between the two different new medicines we are going strong on 5 nights of restless and limited sleep. I guess we will see how it goes for the next few nights. I am in dire need of a nap. I am afraid if I lay down for one I won’t wake up for a week.