Expert: Suzan Jackson - 9/14/2006

Question
this is the second bout of cfs she has had and she is 14! last year she almost flunked out of 8th grade because of it, i don't know what to do and the physician does not seem concerned but she is wiped out and looks ill, any suggestions?

Answer
Dear Patricia -

I completely understand what you're going through.  I have CFIDS and so does my 12-year old son, Jamie.  My 8-year old son has also begun to show symptoms.

Your questions are far-reaching and more than I can answer simply here, but I'll try to get you started and point you in the right directions.  First - school.  Here's a quick overview of what we've done:

Jamie was flat-on-his-back ill for more than half the time during 5th and 6th grades (he's doing much better now!).  Dealing with the schools the past two years was almost as challenging for us as the illness itself.  Last year, we finally arranged for Jamie to be exempt from all district attendance requirements and exempt from all non-required classes.  He attended 3 academic classes at school (managing to attend between 50-70% of the time), and he was assigned a home tutor for his other 2 academic classes.  This worked very well for him - he even ended up with straight A's at the end of the year!  All of this was difficult to get set up - and some teachers were just plain uncooperative - but we finally managed it.  It's important to understand your daughter's legal rights.  I'll list resources at the bottom.

Perhaps even more difficult...you need to find a doctor for your daughter who has experience with CFIDS and understands how to manage and treat it.  I can recommend several, depending on where you live.  You can respond here at allexperts or just e-mail me directly, and I'd be glad to help you try to find a doctor.  

Although there is no cure for CFIDS (yet!), there are some treatments that can help, especially for kids and teens.  Jamie is back to about 90% of where he was before he got sick, thanks to a medication.  Again, there are too many details to get into all the possible treatments here, but I'd be glad to talk with you again.

In the meantime, here are some excellent resources, for both information and support:

www.cfids.org
   Website for the CFIDS Association of America - the best, most accurate and up-to-date information available, with a special section on kids with CFIDS (www.cfids.org/youth)

www.pediatricnetwork.org
   Website focused on pediatric CFIDS, fibromyalgia, and orthostatic intolerance (OI).  OI is a condition that commonly occurs in people with CFIDS.  learning about this and treating it was what helped Jamie to improve so dramatically.  This website has lots of information and also an excellent, active support forum of parents all over the world dealing with pediatric CFIDS.

http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm
   Article on the pediatric network about OI, written by the doctor who first identified it as a part of CFIDS.

www.livewithcfs.blogspot.com
   This is my own blog about living with CFIDS.  Many of my entries are about parenting a child with CFIDS.  I hope you'll check it out.

http://www.davidsbell.com/index.htm
   Dr. Bell's website - he's probably the world's best expert on pediatric CFIDS.  My son and I both see him.  Lots of good info on his site.

http://www.davidsbell.com/DSBBooks.htm
   Great book - "Parent's Guide to CFIDS".  You should definitely get a copy.  It has excellent advice on how to handle the school situation to get your child the help she needs.  We would have been lost without this book last year.

Most of all, realize you are not alone.  There are lots of other parents dealing with these very same issues.  I hope you'll write again or e-mail me.  

Sue Jackson

sljackson@suzanjackson.com
www.livewithcfs.blogspot.com