Thursday, August 06, 2009

Kids' CFS Update

The boys and I spent this morning at the pediatrician's office for their annual check-ups. As always, I was impressed by and hugely grateful for their wonderful doctor, who has helped them immensely and spent a lot of time learning about CFS since they were both diagnosed. She's kind of becoming our local pediatric expert on CFS - I've referred several parents to her.

Craig (age 11) is doing great, as I've mentioned here before. His CFS symptoms began in 1st grade - mainly intermittent back pain, chest pain, headaches, sore throats, and exhaustion - but have always been much milder than either mine or Jamie's. At his worst (before treatment), Craig missed 45 days of school in 3rd grade. At that point, we decided it was time to officially diagnose him and start treatment.

He now takes o.15 mg Florinef (one and half tablets a day) for Orthostatic Intolerance (OI), and is completely symptom-free about 90% of the time! It's really amazing. He also takes potassium supplements, salt tablets, and daily Gatorade to help the Florinef work. This past school year, Craig missed only 12 days!! That's extraordinary for a kid with CFS, and we're so grateful. He also had trouble with recurrent sinus infections (6-7 per year) - probably made worse by CFS - but he had his adenoids out 2 years ago and has had only 1 sinus infection since then, despite having severe allergies in spring and fall. He's incredibly healthy now and able to do just about anything he wants.

Jamie's (age 15) CFS has always been more severe. His began after a bout of Lyme disease in 3rd grade, then he had a full year with no symptoms at all, and his symptoms returned and became much more severe in 5th grade. Jamie missed 60 days of school that year. The following year - his first at middle school - Jamie was so ill that we didn't even count days' absent. The school counselor got him a district attendance waiver, waived all electives, and arranged for a home tutor for two classes. For the other 3 classes, I drove him back and forth to school whenever he was up to attending; he made it to those classes about 60-70% of the time.

Finally, at the end of sixth grade, after seeing Dr. Bell and consulting with Dr. Rowe, we learned all about OI and started Jamie on Florinef. There was no effect at first, until he got up to a dose of 0.2 mg per day. Then, it was like someone had flipped a switch - he went back to school full-time, rejoined band, and was even back to playing soccer.

At the end of 7th grade, Jamie got Lyme disease again (fortunately again caught immediately). After treatment, his Lyme symptoms were gone but his stamina was a bit lower. Lyme is a known trigger for CFS, so this makes sense. He was treated again for Lyme, just to be sure it was all gone, with no effect. In the two years' since then, Jamie has been able to continue full-time school, but he has plenty of down days, averaging about 25-30 missed school days a year and feeling severely crashed anywhere from 1 to 5 days each month. Last summer, Dr. Rowe advised our doctor to increase Jamie's Florinef dose to 0.3 mg, and that helped a bit.

So, that's where Jamie is now. We talked to his doctor today about various possibilities to increase his stamina. He's been coping well during the summer, but it's difficult during the school year, especially to make up missed work after a week or more out (he's in high school now). His pediatrician is going to consult with Dr. Rowe again about 3 possible approaches: increase Florinef dose again, add Midodrine (another common OI treatment), or try a stimulating medication during the day (our doctor said she's used Ritalin-type drugs for some kids/teens with CFS with success - studies show these drugs increase blood flow to the brain, so they should help with CFS/OI). So, we'll see.

That's about it, I guess. I thought some of you might be interested in the history and status of our boys' CFS. We are enormously grateful that they are both functioning as well as they are - we know we are very fortunate, compared to other families with CFS. Let me know if you have any other questions about pediatric CFS.


  1. Maybe their good functioning is in no small part due to your willingness to face the condition head on. It shows how important it is to learn about every aspect of CFS.

    Also, it is an idiosynchratic disease and effects everyone differently, so you have to come to terms with your own individual quirks too.

    An inspiring post Sue, thanks.

  2. Good point, Jo. The better you understand CFS's physiology, the better you can address its symptoms.

    According to Dr. Rowe (the world's top expert on OI), most kids with CFS respond very well to Florinef. Unfortunately, he also notes that it rarely works for adults! Too bad...


  3. Wow, Sue. I'm so impressed with your pediatrician, especially her willingness to consult with Dr. Rowe. You're lucky to have such a good doctor for your two kids!