Sleep, wherefore art thou…

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. 

Amazing weekend…

I have had a hard time finding time to blog these days.  I was using my lunch hour to put together posts, but lately we have been really busy at work and I eat lunch at my desk so I am easy target for questions and interruptions.  I guess I need to start taking myself elsewhere with my laptop to give me the time I need.

A few weekends ago Sara and I attended a Fragile X Behavior workshop that the Fragile X Resource Center of Missouri hosted. The president, Diane, put together an amazing panel of guest speakers with strategies from three different perspectives.  It was an all day event and I feel like we learned so much. It also validated that we are on the right path for Jackson.  We left the event with more knowledge, excitement, exhaustion, relief, and a slight overwhelming feeling all at the same time.  It was crazy what information they were able to give in just a day.

The first speaker was Dr. Marcia Braden Ph.D., P.C., a licensed psychologist who has been working with children with Fragile X for 20 years. The second speaker was Mrs. Cindi Rogers, a parent with two adult sons with Fragile X. The third speaker was Dr. Ave Lachiewicz, a physician at Duke Health who specializes in child development and behavioral health.   I must say that all the speakers were truly amazing and I wish I could fold them up and put them in my back pocket.

We started implementing some what we learned right away, one of which was restructuring our environment.  We still have a ways to go and this gives Sara a green light to go shopping at Office Max and the Container Store. Oh boy, I need to hit the Powerball or Mega Millions soon. Dr. Braden showed examples of how restructuring the environment can make a world of difference throughout her presentation. Restructuring the environment can be much easier than trying to change the behavior. Cindi Rogers showed how she incorporated this and how her sons excelled with this.  She shared a story about one of her sons who like to clear things off tables or shelves by just swiping his arm, with one swoop and everything is on floor.  That sounds super familiar in our household for sure. The area of obsession for her son at the time was the family video library, which back then consisted of a bunch of VHS tapes. Cindi took all their movies and put them in a closet and called it the treasure chest (I think that is what she called it), which she used as rewards for the boys. One of the areas Sara went for right away was Jackson’s books.  He has so many children’s books, he loves to flip through the pages, sometimes he likes us to read them, but his favorite thing is to clear the shelf completely and then take the book and put it behind the couch. I am not sure why this is fun, I am sure the reaction to this was the start of the obsession. Maybe it is the sound of to book sliding on the wall, but he will clear his entire shelf off and will do his best to fit them between the couch and wall, no matter how thick the book. Our couch downstairs has a high back and is against the wall, most thin books are easy to push down, but the bigger books do not fit.  This was causing Jackson to get frustrated, which lead to a more undesired behavior.  So Sara moved all the books into a cabinet, we still read them to him, he just has to tell us when he wants one and we can easily work this into a reward system.

Another area Cindi has mastered the art of visual schedules for her boys and because of this they are very independent. We are already organized and we started taking pictures of Jackson’s toys, snacks, and drinks several months ago after attending Touch Point.  Seeing how to put a picture schedule work through Cindi’s examples and home videos was so helpful. I think with Sara’s mad crazy organizational skills and my technical computer skills we will be able to master the techniques and mold them into our own.

In Dr. Braden’s session she talked about various behaviors and analyzing them.  Some of her session was a recap for us when we went to the parent training at Touch Point. The ABC’s of behavior was something Touch Point drilled into us over the two weeks we were there. It is crazy how you tend to forget about that as time goes on. We have a long way to go on developing a behavior plan for Jackson and it is something we work on every day. We asked Dr. Braden about Jackson’s head banging and for the first time we didn’t hear, hmmm…I am not sure what to tell you.  She asked us specifically when, what, why, who is he around.  We had answers for all of the questions and with that she gave us a suggestion that we are trying and it has helped already.  Jackson likes for Sara to give him all of her attention, when she is not giving him that attention it will trigger some head bang.  So her suggestion is for Sara to give Jackson her undivided attention for a full hour, consistently for a few weeks.  Then start incorporating conversation with someone else within that hour, start off with a few words, then back to Jackson until the hour is up eventually working on redirecting the attention for longer periods of time.  She also suggested working with our OT more to find out what sensory need he might be seeking.  Sara has already talked with our OT and they have been working on finding something for this, so I am sure more to follow. Deep compression on his neck and shoulders seem to be working well so far. Jackson does like to rough and tumble with me on the floor; I kind of tip him slightly upside down with his head on the floor that might be giving him giving him that sensory need he is seeking.

 That same weekend on Sunday we went to an annual FX BBQ at one of the FX families’ house. It was wonderful to see all the kids and play with Jackson.  There was a pool and a swing, so he was happy.  I made new friends with some of the kids. It was really good to talk to some of the families who were at the workshop.  Some of the parents keep telling us that things will get easier as Jackson get’s older. I don’t feel like we have it that hard to be honest, but I guess that is easy for me to say since I go to work and Sara is home with Jackson all day.