|
Title: Pediatric Fibromyalgia- Juvenile Fibromyalgia View count: 3876 Rating: 5.0 (9 ratings) Description: Juvenile Fibromyalgia (Pediatric Fibromyalgia) * Please note-- I don't sell anything. * This is the story of my son Alex, who is now 7 years old. He was diagnosed with fibromyalgia at age four by Dr. R. Paul St. Amand in Marina del Ray, California. He has shown symptoms of the disease since he was a baby. He had such severe bruxism (jaw grinding) that the sound who keep my husband and I up at night. Bruxism is a sign of severe muscle tension in the head and neck area. Once my son became verbal, he began complaining of pain his his mid-back. When the water was running in the bath tub, he would scoot himself around so the hot water could run directly on his spine, soothing this spot. At age three, he also began complaining of pains in the bottom of his feet. His pediatrician theorized he was "flat-footed" and sent him to a foot and ankle specialist. The foot and ankle specialist said he was not flat-footed, but made him orthopedics anyway. (Hey, why not, they cost the parent $500...) My son wouldn't wear them as they made his feet hurt worse... By age four, when my son started getting severe headaches, and signs of IBS, I told my husband we couldn't ignore this any longer and pretend our son hadn't "gotten the gene." I think the hardest part was for my husband to accept the idea that his son had the same lousy disease that made his wife, well, difficult to be around at times. Now, he'd have to put up with two of us in the house?! I bought my husband Dr. St. Amand's book on "Pediatric Fibromyalgia" and asked him to decide for himself if the symptoms in the book sounded like our son. After reading the book, my husband said: "Well, when should we make the appointment?" It's a 1,200 mile round trip drive for us to see Dr. St. Amand, but he is one of the few people who can diagnose fibromyalgia in children. In the three years since then, though, I've hard that the concept of "fibromyalgia in children" is finally gaining hold in the medical community. Since it is now been accepted that fibromyalgia is a genetic disease, doctors realize that the disease does not magically * POOF * appear in adults. If you have the gene for the disease, then you are BORN with the gene for the disease. If you read the comments below this video, you will read that UCLA is now diagnosing Pediatric Fibromyalgia, and there are cases being diagnosed as far away as Israel. Now, I live in the San Francisco Bay area and I have not told my own pediatrician that Alex has been diagnosed with Juvenile Fibromyalgia. I am TERRIFIED to do so. Why? Well, because, I don't think it was something he was taught in medical school, and unless he has attended a medical seminar on the subject, I think he will look at me like I'm crazy. There are so many misconceptions about fibromyalgia, I think it would be a wasted effort. Until the blood test is available to "prove" and document the disease, (and thankfully, the blood test is in the testing stages,) my local pediatrician has no professional advice he could offer to help with my son's fibromyalgia. I just don't think they train and educate pediatricians about this disease in children. (I hope somebody out there can prove me wrong. I would love to be wrong about this.) Until then, we'll continue to make that 6-hour drive and take our son to a specialist who does understand this disease. How is my son doing now? Awesome. He is an accelerated program at school, and pulling fantastic grades. He loves going to school, and his teachers say he "loves to learn." He loves it so much that he asks his teachers for even more challenging work. When he's not in school, he's running around with all the kids in the neighborhood, riding bikes, and playing baseball and kickball, just like any other 7-year old boy. My husband looks at him and says: "I want HIS childhood!" And, yes, he still takes his medication twice a day. We don't have to remind him-- he does it on his own. Tags: fibromyalgia, fibro, chronic, fatigue, pediatric, juvenile, guaifenesin, protocol, guai, dr. paul st. amand, syndrome, (cfs), (fms), Author: dianacwolf |
