Posted By Umma on August 23, 2010
I feel as though we’re in a pretty good place. We may not know exactly how to address the issues we see but I think we’re getting close. As we all know, how to treat an issue varies greatly from individual to individual. I think we have come quite a long way this year in figuring out what doesn’t work, which has value. We’re narrowing down the multitude of options and based on what we’ve been seeing from Monkey, we are making progress.
Thursday was our OT/PT evaluation and our meeting with the developmental pediatrician who is supervising Monkey’s medication. We sat down with the OT and the PT and chatted for a while about our impressions of Monkey, what concerns us, what the school does and what we do at home. Using our tips on deep pressure (and some assistance from Eggy) they were able to get Monkey to complete the Peabody evaluation.
We’ll get a much more detailed report in the next week or two but we did sit down briefly to discuss their “impressions.” They were very pleased with his progress. He was cutting and using markers in ways he was not able to do last year. He was problem-solving. The OT demonstrated a lace-up activity, Monkey replicated the activity but not on the first attempt. When he looked at what he’d done he knew, without being told, that it wasn’t right. He took it apart and fixed it. Very, very impressive.
They were able to see the huge benefits that Monkey gets from deep pressure. The PT held Monkey on her lap and squeezed Monkey tightly while the OT demonstrated activities. His ability to attend to the activity was greatly improved. It took them a little trial and error to start but once they made the connection it worked amazingly well. The PT would loosen her grip on him so he could complete the tasks.
Suggestions that came from the visit:
- Under Armor (wear under his clothes to school)
- Sensory interventions should be accessible to Monkey (they suggested a bag hanging over the back of his assigned chair where they could keep his wrist weights or chewy tubes within easy reach)
- One staff member should be identified for Monkey for requesting sensory interventions.
The second part of Thursday’s evaluation was more of a medication review than a true evaluation. First, the Dr. was very impressed with Monkey’s IEP. He loved the social goals but is concerned that 1. there is no specified person to supervise/target his social skills, it’s all just “throughout the day” and 2. that there is no board certified behavioral analyst anywhere on his team. He is going to suggest that Monkey may need a one-on-one aide to target social skills but I think Duhdee and I are leaning towards keeping the staffing the same but pursuing some outside social skills therapy. This is the exact class type we wanted, I’m not ready to throw up our hands before school starts!
We also decided to make some changes to Monkey’s medications/supplements which was not unexpected. He has been taking A.dderall plus we’ve been supplementing with l-acetyl carnitine and folic acid. Both the folic acid and the l-acetyl carnitine were geared towards the ADHD and attention. We never really saw any major improvements with the l-acetyl carnitine. It’s been about a year and we still ended up having to pursue a prescription for the ADHD so that is done. We did, however, see improvements after a few months on the folic acid…way back when. We’re going to keep that for now but we will revisit it down the road.
The A.dderall is a different situation. We did see gains when we started on the R.italin and those gains have been maintained on the A.dderall *but* Monkey’s sleep is a problem once again. He is frequently waking in the middle of the night and unable to fall back asleep. This makes life very troublesome for him. While we were talking to the Dr. he asked if this is how Monkey is on the A.dderall…it would have been massively impressive if we could have said yes because he was sitting very quietly in his chair. I, unfortunately, had to point out that Monkey was very nearly falling asleep sitting up. He was doing those 10 second blinks and rubbing his eyes trying desperately to stay awake.
I broached the subjects of anxiety and the mega-melatonin dose he’s on and the Dr. decided that we should stop the A.dderall. Huh. He wants to figure out if it’s the A.dderall that is causing the sleep issue or not. I wasn’t 100% sure about this plan but he has way more experience than I do, lol, so we’ll go with it. He also wants to keep the melatonin in place for now but maybe do a drug holiday after a couple of weeks without the A.dderall potentially interfering. OK.
Then on Friday, we met with Dr. Picker and Sharyn Lincoln (if you’ve met them you’ll know why this is always our favorite part of the clinic!). They were both at the conference and we’d sat in on a couple sessions that overlapped. It was nice to be able to refer to the sessions as we discussed Monkey and what direction to go from here. The short version is that, at the team meeting, Dr. Picker was going to suggest we switch to T.enex to simultaneously treat the ADHD and the sleep issues. We should hear the team decision within the next week and we’ll implement the new plan. Yay! The whole time we were talking (probably an hour) Monkey played with his “Cars” matchbox cars. He stood by Dr. Picker and even used him as leverage to climb onto the exam table so he could play with all the interesting medical equipment on the wall.
So, to sum up. He’s making gains in every area but he’s falling further behind in play/social behaviors. His attentional issues are a concern. His poor sleep is a concern. We have identified a medication that should help with both. And, of course, Monkey rocks…but we didn’t need a clinic visit to learn that!
Category: Adventures in medication ♥ Life with Fragile X Syndrome |
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