Andrew & Jason Frech Update (Berwyn, PA)

We will be following up with the children as they titrate off the medication and resume life without it. This is the first update to Jason & Andrew’s story, to see their original story click here:  Jason & Andrew

If I had to title this it would be “It’s the little things…”.  We have not seen major, tremendously horrible regression in either Andrew or Jason since they weaned off of stx209, Arbaclofen.  However, what we do see makes you pause and feel very sad and powerless.

Jason was on the open label extension for a year.  We had seen clearer thoughts, more expression and creativity from him.  He was a little calmer but still would be described as an anxious often distractible child.  The first thing we noticed when Jason weaned off the trial medication was that his speech had changed.  What once were clear thoughts are now disjointed facts.  For example, if he is talking about a topic, like in science class at school he had observed aquarium life and another related thought pops into his head, the caterpillars came out of their cocoons because that was what he observed in science last year, he would compress both facts together in the same sentence.  He also now does word associations such as if you are talking about getting ready for bed, he’ll mention Mario (because he has Mario pajamas) which will lead to talking about his DS (because he has a Mario game) and the DS needing to be charged sort of like the book “If you give a mouse a cookie”.  His speech is also much more garbled and harder to understand.    He has a harder time coming up with sentences for journal writing.   He is also more likely to chew his fingers when he is excited (happy) or anxious.  He also needs to have things in his hands at all times.  This can be anything he finds interesting.   At the pool it is often a tennis ball or some rackets from tennisracquets.com, at home it is paper, books, a small car, etc. This was something he did prior to being on the medication.  His ability to sustain play has also decreased.  He has a hard time staying with a game or playing.  At home he moves from toy to toy and needs direction.

Andrew was on the open label extension for 3 ½ years.  We really did not know what to expect with his behavior since he was on the medication for so long.  We wondered how much of what we had seen was maturity and how much was the Zoloft we had added last year.  What we have found return is garbled speech and disjointed thoughts.  Constant perseveration on a topic has returned.  The ability to “just be” in the moment is gone.  What comes next is the focus.  The most disheartening regression with Andrew has been in reading.  He was able to read to me 2 chapters a night in an Arthur Chapter book series this past school year.  Now, we are back to reading together the Henry and Mudge Books which are beginner reader level.  He needs to have it quiet with a clearly defined end.  When he reads you can see his eyes having trouble focusing on a line causing me to use a line tracker with him to guide his eyes.  His word recall and his ability to pull out sounds, such as when I say “long A” or “short I”, is very slow.  He needs to know the schedule at ALL TIMES with exact times and will repeat this all day.  We had to pull out our daily picture schedule which hadn’t been used in over a year or so.

Thankfully, they are still the same happy kids who want to play and have fun just a bit differently than before.  Would we do a trial again? I don’t know.  It is hard to have gotten a chance to see the potential and have it dashed. But in order for new therapies to come out we need to get back and try.