Pre-apologies for rambling. Key facts: 1) I'm in perfect health 2) My wife has MS and has been on meds for 4 years and 3) We live in Salt Lake City and face extreme hot and cold temps. We're planning a move from SLC to a more neutral climate.
My eight-year-old son has had a miserable quality of life for the last four years. Through a long diagnostic process including two biopsies, he was diagnosed with
Chronic recurrent multifocal osteomyelitis. We've tried MANY treatments for the CRMO pain, none have really worked. Short doses of steroids took the edge off but they're not a long-term solution.
In addition to the lesions on his bones(due to CRMO), he has developed MANY other symptoms, including:
- Constant, constant fatigue
- sensitivity to hot/cold temperatures
- frequent skin lesions
- hip/pelvic pain
- random pain in extremities
- painful urination
- burning sensation in boy parts/bladder
- eye fatigue/pain (vision is manageable but his EP is considered slow)
He's had bone scans that have shown issues in his lower extremities. He shows an elevated SED rate and has high inflammatory markers in blood tests.
One of the first symptoms he showed was dragging his foot when he walks. He also falls down a lot.
Repeated MRI images show multiple white spots(lesions) on his brain. The MRI is repeated every 6 months, the spots have been fairly consistent in size, number, and placement.
He's not exactly sleeping well, and that's also contributing to his poor quality-of-life. He often leaves school early due to pain or unmanageable fatigue. His teachers notice and have been very supportive. He's also developed personality and anxiety issues due to not feeling well and the constant doctors visits and tests. His ability to cope with his symptoms have improved over the last year.
He is under the care of a top-notch Rheumatologist, a respected pediatric neurologist, a team of doctors at the UCSF pediatric neurology institute, and associated other specialists, such as highly specialized optometrists who deal with neurologic issues, as well as a dermatologist.
All of these physicians acknowledge the symptoms and issues, but we can't seem to improve our son's life. Eyedrops here, skin cream there, but there is nothing that explains or ties together all of his symptoms. Its always "take this test or MRI and we'll see in 6 months." The neurologists don't think he pediatric MS but have suggested he try MS meds in the past.
His sensitivities to extreme hot/cold temps, a sometimes-drooping left eye, and the spots on the brain MRI lead us to believe that this issue might have a neurological foundation - the neurologists have tried everything short of interferon medication to treat him. Without a firm diagnosis or explanation, we are not too hot on the idea of giving him interferon due to the side-affects.
Otherwise, my son is bright and motivated-he wants to get out and play, but pays the price in pain and fatigue shortly thereafter. He loves school, loves to read, and simply is frustrated and not understanding with his condition. He has a younger brother in perfect health, he often questions why he shows so many symptoms that his little brother doesn't. Additionally, its been difficult for us to keep our understanding (and sometimes cool) while watching our son be miserable and in pain.
What are we not doing? What could we be doing better? We haven't left too many stones unturned - we've taken him to UCSF to be evaluated; we're contacting other out-of-state facilities as well. He's about to enter the third grade and we don't want him to have a repeat of second grade, where he missed a lot of school due to not feeling well.
Are there any types of specialists or conditions that we're not looking into? What do we need to demand more of from our doctors? He's been affected for far too long without any real explanations or effective treatment.
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posted by kldickson at 11:39 AM on August 11, 2008