My 13-year old son is still very sick. We don't know what caused this crash, but it's been the most severe one he's had in a couple of years. He's missed 8 of the last 10 days of school. It's so hard to see your child suffer like this. On top of that, I'm having a terrible time getting his teachers to communicate with me about what work he's missing at school, even though they're supposed to send work home as part of his 504 Plan (an accommodation plan for kids with illnesses or disabilities). It's been very frustrating.
The one bright spot this week was a visit to see his pediatrician - his regular doctor, not the non-believer we were forced to see last week. How wonderful to have a doctor who not only believes in CFS but knows my sons very well and is always striving to learn more about CFS so she can help them.
Instead of the cursory check of ears, throat, and chest he got last week, Dr. Wonderful gave Jamie a thorough exam, asked in-depth questions, and reviewed his latest lab results and a recent visit to a specialist. She even gave him tips on how to lessen the effects of orthostatic intolerance while he's crashed, based on an article she's recently read. Wow. Even though she couldn't offer much immediate help (not much to do but wait it out), her acceptance, understanding, and support were a great comfort to us. She even asked how I've been feeling and how the anti-viral treatment is working. Most amazing of all, when we discussed Jamie's very low NK cell function in his last lab test, she admitted, "I really don't know much about NK cell function. How about if we find an immunologist at the local children's hospital who understands CFS and can help advise us on treatment?" Like I said, wow.
I've heard all the nightmare stories about doctors who are ignorant and dismissive of CFS - and I have run into some of them myself. I am so very grateful that my sons and I both have doctors who get it, who care about us, and are willing to learn more so they can help us. If you don't have a doctor like this yet, don't give up! I stumbled onto my own doctor by pure chance when I was searching for a diagnosis. There are good doctors out there, and it makes such a difference when you find one.
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.
Yes, it is wonderful when you find a doctor that believes you and wants to help; wants to learn more. We are glad to have found one, too.
ReplyDeleteIsn't it hard to see your child suffer? I have a local friend that has CFS, but I find myself envying her at times, because it is just her. Her children are healthy. I have to look at the overall picture to remind myself that my kids have had opportunities to learn things that only having this chronic disease teaches you. Their character is getting molded in ways nothing else could produce. Hope your son starts feeling lots better, soon.
I'll spend more time reading up on your blog. I too have CFS before they had a name for it and Fibro and a few other things. About 2 months ago they finally decided I had a thyroid problem also and what a difference this pill has made in my pain, exhaustion and energy. I spent 10 yrs. trying to get them to let me try it just in case it was part of the problem too. I'm sad your boys have it also. I believe my oldest has the same symptoms creeping up on him as I did at his age. I hope not, but we never know.
ReplyDeleteI was wondering if you would mind if I'd post your blog on my blog?
thank you. and take care.
Boy, are you right! I've been in Seattle 25yrs and STILL searching for that winning team. Very stressful and exhausting, but keep the faith--they are out there.
ReplyDeleteBrenda -
ReplyDeleteThanks for reading my blog and taking the time to comment. I'm honored that you want to link to my blog from yours. I'll be sure to check yours out soon (kids are home from school today - no free time!) Thanks -
Sue