Don’t mind me, I’m just part of the entourage.

Taking Monkey to the Fragile X Clinic is like being part of an entourage.  From the moment we step off the elevator he is greeted by e.v.e.r.y.o.n.e.  Duhdee and I are just background.  Word of his arrival flies through the clinic and people we are not even scheduled to see make a point to track him down to fawn over him.  He now greets every one of his fans with a shy smile, a wave and a “Hewwo.”  

This sort of attention used to be very hard for him but he’s beginning to accept it as his due.  The one person at his most recent visit earlier this month who did not take time to greet him (a very busy receptionist) soon found himself confronted by Monkey while Monkey waved in his face.  Hopefully whoever he was talking to on the phone didn’t mind the ever increasing volume of Monkey’s greetings as the receptionist continued to ignore him.  No worries, we did rescue the guy but it took us a bit to get across the waiting room to remove the little pest!

So, what did we learn this year?  One, Monkey is doing amazingly well.  Other than the actual physical exams he enjoyed himself.  He was making great eye contact with the Dr’s and the staff.  When he did get upset he recovered very quickly.  Everyone commented on how much more mature he is and how well he maintains his composure.  There was a time when he would only tolerate being in the exam room (not even being examined) with a great deal of comforting and deep pressure from Duhdee.  Now he wanders around the room, explores the toys, the medical equipment and even tries to take over the Dr’s computers…even when somone is sitting there.

Second, Dr. Picker and Dr. Hagerman are sort of opposite ends of the spectrum on medication.  Dr. Picker really wants us to try the l-acetyl carnitine and some modifications in our routines to address the attention issues and the sleep issues before we talk medication.  We are going to re-evaluate in 4-6 months and decide then if we want to add clonidine or some other stimulant.

Third, Dr. Picker is noticing that about 1/3 of the patients who try minocycline see improvement.  He really wants to see some hard data before he begins prescribing it regularly as most of the current information is anecdotal.  He’s also reluctant to do so with Monkey given his age.  He did comment that anything that works to change the pathways in our brains can do so in a beneficial manner but that it can also do just the opposite.  I appreciate his caution, hopefully the extra supplements and improving the quality of his sleep will help alleviate the attention difficulties.

Four, did you see that comment above about improving the “quality” of his sleep?  Bugger!  I was really hoping for an increased QUANTITY, lol.  The developmental pediatrician we saw did say that if he does in fact have ADHD then it would not be unusual for him to require less sleep than normal.  Right now Monkey is getting a decent amount of sleep but it’s all broken up which means he is never well rested.  He gave us a few ideas to try in order to compress his sleep into one block.  One of those ideas is that we need to push his bedtime BACK so he is going to bed every night at the time he normally falls asleep (he usually goes to bed and spends 30+ minutes putzing around before he nods off.) so bedtime is now 30 minutes later.  Yay for Monkey…ummm….*sob* for Umma and Duhdee?  After 14 hours of CONSTANT movement and activity we really, really need bedtime to come sooner, not later.  *Sigh*  We are giving it a shot for a few weeks.  Clearly what we have been doing is not working so well.  We are in a period of 6+ wake-ups each night.  The other sleep related change is that the melatonin is back.  We’re keeping a sleep log to see how the changes affect his patterns…so far, not great.  I’m not sure 4-6 months is going to work for us in this area!

Zzzzz.

4 thoughts on “Don’t mind me, I’m just part of the entourage.

  • September 29, 2009 at 4:39 pm
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    what is l-acetyl carnitine?

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  • September 30, 2009 at 12:03 am
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    Interesting post. I’m glad to hear of a doc who’s cautious about the minocycline…I am, too, and would like to see some more studies about it before giving it a try.

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  • September 30, 2009 at 8:48 pm
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    Nathan had some difficulty sleeping at one point. Our OT suggested that maybe he was seeking sensory input during the night. We made some changes and found that a body pillow tucked against his side helped him from squirming around all night. Also, we put a soft gel mattress pad/protector on his bed so there was no noise when he was rolling around because that woke him up. Another thing that was suggested was snug pj’s. They sell compression clothing on especialneeds.com, but our OT suggested that people have been successful trying pj’s that were a little too small or bike shorts ( lycra). I don’t know if the needs are sensory, but I thought I’d let you know.
    Another thing that we used around the house was called Hemi Sync. Just google it. They sell a wide variety of listening CD’s. I know they have some for sleeping and they’re only about $20. Not a bad thing to try. They explain the science behind it. We have the Metamusic CD and it does help with concentration for both of our kids.

    I hope some of this was helpful-
    Aimee

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  • October 1, 2009 at 11:42 am
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    Aimee, others have mentioned the same thing to me. I think we might try a weighted blanket but I’m going to have to make one from familiar blankets most likely. Monkey is so rigid sometimes, I’m afraid to buy one b/c I am 99% sure he will reject it on sight. The booger. We just bought him a whole new set of PJs from Gymboree, their PJs are designed to fit very snugly, hopefully that will help too…I hadn’t even thought about that. They were just cute, lol.

    The developmental ped. wanted us to cut out overnight music all together which we are trying but it certainly hasn’t helped much that I can see. I’m going to look at the Hemi Sync CDs, I’ve been meaning to anyway but couldn’t remember the name 😉 Thanks!

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