What is that strange sound? It's silence! Today is my first day alone in the house after the busy summer. Craig started 5th grade on Monday, and Jamie started 9th grade (high school!) today. So, it seems like a good time for an update on my kids' CFIDS and how they're doing these days.
(First, a quick update on me, since you've been asking...I'm about the same this week. I'm still felling pretty run-down, still have low stamina, and still feeling some knee pain, especially in the evenings. I've now taken 2 weeks of antibiotics to treat my Lyme disease and have another month and a half to go. I'm certainly in better shape than I was two weeks ago and am hoping the improvement continues. At least now I can rest more!) So, back to the kids...
Craig, who began to have CFS symptoms 4 years ago in 1st grade, is doing really well these days. By third grade, his CFS has gotten bad enough that it was affecting school attendance; he missed 45 days of school that year. That April, he started taking Florinef for Orthostatic Intolerance (OI), per the recommendations of Dr. Peter Rowe at Johns Hopkins (he's the doc who first discovered OI was a part of CFS and pioneered its treatment, especially in kids) who consults with our pediatrician. The results were amazing! In 4th grade, last year, Craig only missed 20 days of school, which might seem like a lot to some people but is really great for a kid with CFS. Best of all, Craig is mostly symptom-free most of the time. With Florinef, his chest pains disappeared, his stamina improved, and he now rarely crashes. Of course, there's no avoiding some crashes (hence, the 20 days' absent last year), but his crashes only last a day or two now.
Jamie's CFS history is more complicated. He started to show CFS symptoms after a bout of Lyme disease in 3rd grade but was still fairly healthy until the start of 5th grade (the same time that Craig began to show symptoms). At that point, Jamie became quite severely ill, although his CFS was still very up and down. He'd feel OK and attend school for a week or two, then crash badly and be unable to get up off the couch for a week or two. Jamie missed 60 days of 5th grade, and he remained very ill through 6th grade and ended up taking 2 classes with a home tutor and attending 3 classes at school about 60-70% of the time (all the rest were waived, as were all attendance requirements).
At the end of 6th grade, Jamie started taking Florinef for OI, and the effect was nothing short of miraculous for him. Florinef (plus LOTS of Gatorade) has worked so well for Jamie that he was able to attend 7th and 8th grades full-time and get back into band and soccer as well. In the past 18 months, however, we'd seen Jamie's stamina gradually decrease. He was still attending school full-time (minus crashes, of course), but we could see that it took more out of him and his days missed were slowly increasing again. This summer, our pediatrician again conferred with Dr. Rowe about Jamie, and we found out that we could increase his Florinef dose, even though he was already taking the maximum that most people take. He and our pediatrician agreed that some of Jamie's worsening was probably due to his tremendous growth. He went from 5'1" to 5'7" in about a year!
So, this summer, we increased the dose of Jamie's Florinef, and it seems to be working! His stamina is still a bit less than it was in 7th grade, but he's now able to handle more activity again. We'll see how it goes with school back in session.
As for school, I've talked to Jamie's new guidance counselor and school nurse, and they seem very responsive and ready to help. We'll meet with them and all of Jamie's teachers next week to review his middle school 504 Plan (an accommodation plan backed by federal law) and update it, if necessary. I've heard from other parents of kids with CFIDS that high school teachers tend to be more flexible and easier to work with than middle school teachers. We certainly hope so!
For more information and resources on dealing with school issues for kids with CFS, check out my post from last year on school and CFS.
As for me, I've spent the morning resting, doing some gentle yoga, a bit of writing,and enjoying the quiet!