Well, it's back. My daughter had her first episode of joint pain when she was 8 and the second when she was 12. She's now 14. At 12 she had MRIs, a bone scan, blood work-ups including lyme and Rh factor, and an EMG (the neuro one), colonoscopy & endoscopy. The EMG and GI work-ups were normal. The bone scan showed she had osteopenia - the doctor said she had the bones of an old lady, and the spinal MRI showed she had inflammation in her spinal cord, but the neurosurgeon did not believe this was causing any pain because it was not impinging on anything. The blood work-up showed she has Hashimoto's - but her thyroid was functioning normally. She has a normal temperature of 97.
She also had an Abdominal CT (ordered because she has had stomach pain on and off since she could talk) which showed some problems in her jejeunum. A video pill later showed some erosions, but no frank ulcers in the jejeunum - this was treated with nexium. She tested negative for celiac disease. She has no stomach pain now, and has not since she started taking nexium. She has been off of the nexium for about 18 months.
The rheumatologist said she had fibromyalgia due to the pain in the pressure points. She is currently not feeling any pain anywhere other than her joints.
Her joint pain has been severe enough to keep her from walking - during the 12 year old episode she was in a wheelchair for 4 months - this was precipitated by what she described as sprains in both knees and an ankle. This time (at 14) she feels that everytime she walks she has to be really careful because she feels like she is going to twist one of her knees. The only medication that has been able to touch her pain (which can be severe even when she is still) is neurontin. There is no swelling or redness in her joints.
Over the past two years she has been taking a high quality multi-vitamin - Michael's Teen Girls and a calicium & magnesium supplement with enzymes. I recently put her on a somewhat gluten-free diet and she has enzymes with every meal, including "glutenease" when she eats at school. Because of the problem in her jejeunum I have always been suspicious she had celiac in spite of the negative test results. I also recently started giving her fish oil supplements and Threelac as insurance in case she had any yeast issues.
I really felt I had come close to beating it with supplements, but unfortunately her recent relapse shows this isn't the case. When she is in remission, she has no pain (in joints or stomach) and functions absolutely normally. The only thing comforting to me about this is that I know since it has gone away before, it will go away again.
These episodes seem to occur around times when she is growing rapidly - she grew 4 inches over 8 months during the 12 year old episode - this was a very good thing as she has had growth delays. She is now 5 feet tall, which is far under her genetic potential (I am 5'5 and my husband is 5'10). She is also underweight for her size at 80 pounds, despite a healthy appetite. After everything settled down after the 12 year old episode, she gained 20 pounds, but during the last year she has plateaued in height and weight.
Does anyone have any ideas? We are in South Florida, and have had ticks - and I know she was bitten w/o a bull's eye rash, although the docs all say the ticks here dont carry lyme, but I remain suspicious despite the negative test results.
I also want to consider alternative methods at this point. Would accupuncture, herbs, etc help? Which is the best doc for her to see - Naturopath, integrated, accupuncturist, homeopathic? What should I look for as far as specialties since her symptoms are sort of not arthritis, not really autoimmune and not really definable? Which letters after the name should I look for?
Thanks so much for any input as to diagnosis and/or treatment.