Life with Fragile X Syndrome

When we first started Monkey on the R*italin we saw a really big improvement in his eye contact.  The teachers noticed the increased eye contact as well and also noticed that his speech was more on topic.  We were all very excited. 

We did notice that he was having a bit of a down period right before his 2nd dose and so, at our one month follow-up visit, we switched to the extended release formula.  We also increased the dosage.  We made the switch over April vacation and since then we, and the teachers, have noticed that the benefits we were seeing before have faded.  He’s making less eye contact and he’s more distractible.  On top of that, he’s been very emotional. 

Very emotional.  To the point that we have been staying home as much as humanly possible to avoid the whining and out-right meltdowns on outings.  He starts whining about going home the second we get in the truck and when we return he’s a mess.  When I get home in the evenings he loses his *mind* within 30 seconds of me walking through the door because I haven’t changed into my pajamas (yoga pants, fortunately.)  Even *if* I’m in the process of walking from the front door to the bedroom to change. 

I mentioned yesterday that he was a mess on Saturday while we were party shopping.  It wasn’t just the idea of a party that was upsetting him, it was the very fact that we were not home.  It has been rather unpleasant and getting worse, it seems. 

On Sunday, we skipped the medication.  We saw about the same eye contact as on Saturday, which was less than what we used to see.  We also saw a much happier little man.  We went to the nursery to get plants for the window boxes and the hanging planter, he did amazingly well.  He wasn’t whining.  In fact, I heard more than a few giggles.  When we got home Duhdee’s parents were there visiting with Great Grampy and Monkey did really, really well with them.  He played ball with them in the yard for quite a long time and he even gave hugs when they left.

We decided we were going to skip his medication today to see what the teacher’s report.  We didn’t tell them.  Duhdee will mention it after school to see if they noticed any differences.  I’m pretty sure they are going to tell us he had a good day.  He was having a much better morning than he has been.  He seemed less anxious.  If that holds true for the rest of the day we’re going to have to talk to the doctor about switching again.  *Sigh.*

This morning we had a follow-up visit with the developmental pediatrician who has prescribed Monkey’s medication. 

He looked at the weekly reports that the teacher has been filling out.  He was impressed with the depth of information that his teacher provides, she adds explanatory notes rather than just rating Monkey on a scale of 1 to 3.  He asked us what we’ve seen at home and it matches up with what the school has seen.  Monkey is making more sustained eye contact and his verbalizations are clearer, more on topic and he’s combining them in new and longer variations.

Monkey hasn’t exhibited any reactions to the medication.  He is, at times, more emotional at transitions but not terribly so.  He’s still sleeping well, except for this week because he has a cold and wakes up coughing at least twice a night, ugh.

We had him on a “tiny” dose, we’re going to double it and switch to the extended release formula.  We didn’t start with the extended release form because it’s a capsule rather than a pill and we needed to split the pills.  Next week is April vacation week so we’ll have lots of time to observe him for any changes in behavior or appetite. 

Though the changes we have seen are not earth shattering they are worth celebrating.  The increased eye contact has been particularly nice, I didn’t realize how little true eye contact he made with us until we saw the change.  It still startles us at times to find him looking at us so intently when we are talking or playing.  I’m excited to see what happens next!