Thursday, September 13, 2007

Kids and CFS: Update

It's been a long time since I've written here about my two boys and their CFS. We have two sons, ages 9 and 13, who've both had CFS for several years now (if you want to read more about their history, diagnoses, and treatment, click on the "kids and CFIDS" label at the end of this blog to see all of my blogs about them).

Overall, both boys are doing quite well now. We're enormously grateful to Dr. Bell, Dr. Rowe, and our own pediatrician for their help over the past few years. Both of our boys had dramatic improvements with Florinef treatment for their Orthostatic Intolerance (OI). If you have a child or teen with CFS, you must learn about OI (thought to affect over 90% of people with CFS); many kids respond very well to treatment, as our boys have done.

Jamie (our 13-year old) has just bounced back from a pretty severe 3-day crash. No big surprise - we let him go away for the weekend with his friend's family - three of his closest friends in the pool and the ocean for two full days. A crash was almost certain, but sometimes you just have to go ahead and let them have fun and suffer the consequences. I asked him last night, while he was still feeling terrible, if he would do it all again, knowing how bad he'd crash. He grinned widely and said, "Definitely. It was awesome!"

Jamie still seems to be suffering from the effects of his Lyme infection in April. The infection triggered a slight worsening of his CFS symptoms, mainly reduced stamina. Lyme is a known trigger for CFS, so this isn't surprising. Just to be on the safe side, his pediatrician and a specialist are examining and testing him to be sure there's nothing else going on. Overall, though, he's doing well, still able to be in school full-time, in band, and even playing soccer. What a change from two years ago, when he was bed-ridden almost 50% of the time!

Craig, our 9-year old, started Florinef in April, with the same dramatic improvement we saw with Jamie previously. Craig was home sick this Monday, after an exertion-filled weekend of soccer, swimming, and golf, but by Tuesday morning he was feeling better and back to school. That was his first crash day since April - amazing! Craig also had adenoid surgery this summer because he struggles with chronic sinus infections. This is his bad allergy season, and he's been congested the past few weeks, but so far, no sinus infections.

So, we're still dealing with occasional crashes and school absences, but compared to years past, life is good.

1 comment:

  1. Thanks for posting this! Your kids have so much more of a life then mine do, although my daughter has seen some improvement and is able to do school part-time now. My son is still struggling just to get through his days. We just took him to a new doctor for a whole new round of tests. I will look into some of the info you posted.