Friday, August 9, 2013

Summer is almost over.

School starts back up in twelve days. Twelve. This summer has gone by really fast, as as all summers do. It has not been an especially nice summer, I must admit. With the discontinuation of the Arbaclofen drug trial, we had several weeks of weaning Drew from our miracle drug. We had some ugly withdraw symptoms and added Baclofen in hopes of easing the transition. In hindsight, it probably helped some. But not enough to make Drew really functional.

He has been more physically aggressive than I have ever seen him. I got a taste of what other Fragile X parents have been dealing with for years. Pushing, pulling hair, etc. None of that hurts me as much as seeing him hurt himself, though. I hate to see him slapping his own face and biting his arm until he breaks skin.

Drew's aversion to showers has recently resurfaced. He screams and cries and yells nasty things while in the shower, getting out as soon as possible. It has been stressful, to say the least. We are trying to get to the root of the problem to find a solution. Who wants to live in constant fear of taking a shower? That's no way to live.

We decided that we wanted to wean Drew from Baclofen and try acamprosate, based on the reports I heard on Facebook. Some people were saying it worked even better than Arbaclofen for them. Hopeful, I contacted Dr. Berry-Kravis' office about initiating the process. Acamprosate is not available in generic and goes by the brand name Campral. Eric contacted our insurance about it to find out the cost involved. They said we could negotiate a reduced copay and could lower our costs substantially. Some insurances were rejecting coverage for this prescription, as Campral is used to help recovering alcoholics, and prescribing it for people with Fragile X is off-label use. There is a drug trial that uses this drug that is going to start up soon, but we really wanted to get things situated before school starts. After a couple weeks, we learned that we are not eligible for copay negotiations and went ahead and filled the prescription. We've been weaning him from Baclofen and titrating him up to his dosage for a couple weeks now.

I have seen some decrease in the aggressive behavior, though he gets a little obsessive and irritable when it is time for his next dose. He won't reach his full dose of acamprosate and be totally off Baclofen until the first day of school. How nice, right?

He will be going to junior high and will attend a different school. New location and all new teachers. Thankfully, his aide will stay the same. She has been with him since Kindergarten and is wonderful with him. His classmates are also the same. That is good. They are a positive influence on Drew and that will help his comfort level as well.

Poor Blake has been on the back burner this summer. Eric has really been making an effort to do fun things with him, since our attention has been so focused on Drew. Good thing Blake is more laid back than his brother. He sort of rolls with the punches and is able to cope pretty well. I can't believe my baby is going to be a fourth grader! He went with Eric and my sister and nephew last night to a Dayton Dragons minor league baseball game. He had a blast and got a Dragons bobble head.

Another thing I am happy about is how well he did at the dentist yesterday. This spring, we took him and had him put under anesthesia for cleaning, fillings and sealants. Yesterday was his recheck. He allowed the hygenist and dentist to examine and clean his teeth. He even got a flouride treatment!

This summer has gone fast, it is true. I am not particularly excited about the whole back-to-school thing. But, I am hopeful that with our current medication and interventions, they will do just fine.