I just read an excellent article (pdf format)about pediatric CFS recently published by the New Jersey Education Association. It is aimed at school teachers, staff, and nurses and does a great job of explaining what CFS is, how it affects kids, and what sorts of accommodations can help. This would be a good article to bring along to school administrators when you're working to get your child the educational support they need.
It's wonderful to see this kind of accurate information finally being published!
(For more information on help for kids with CFS in school, see my recent blog entry).
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Hi Sue, just found your blog and am looking forward to following it and reading some of the backlogs!
ReplyDeleteI also have CFS; am being treated for suspected lyme/coinfections, but have found that toxic mold was a large of what was making me sick; dealing with that has led to pretty large improvements.
I'm sure you've recieved lots of treatment suggestions, gone down lots of paths - that itself can get so tiring - but I just wanted to throw out another suggestion to look into toxic mold, especially because your kids, and recently your hampster too, are also sick. I've conversed with a good few people who also believe mold was making them sick (small animals seem to be pretty susceptible too); mold toxins can interact can also interact with lyme, which it seems your son was diagnosed with. A dr. Shoemaker has good recent books on the topic (I've heard good things about another book, The War Within) and he has a website with resources.
-Josh
I hope the NJ program spreads the word.
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