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Neurology (Expert Forum)
child with question of neuropathy and serious disease
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child with question of neuropathy and serious disease
by CINDY4, Aug 18, 2003 12:00AM
I have a 9 yr old with symptoms of Churg-Strauss a autoimmune vasculitis. She has severe asthma, pulmonary infiltrates, eosinophilia of 10-15% for the past year, severe sinus disease, and many GI problems. She also now has questionable neuropathy which is another of the critera for diagnosis of this disease. She has had numbness, pain, and tingling in her limbs for 2 yrs, but no weakness or loss of sensation on exam.She had a nerve biopsy done which showed a mild active, chronic axonopathy(done in Dallas at teaching hospital), and then a EMG which was normal and a NCV which showed mild abnormality in peroneal nerve(reading was 35, norm 40 and above) Her neuro felt unsure of neuropathy because of normal exam, and mild pathology and mild NCV. So drs sent us to Boston Children's for 2nd opinion. Boston says nerve tissue basically normal only very mild abnormalties, and with normal exam, doubt neropathy. Also, no tissues lung or nerve show vasculitis. With the neuropathy in question everyone is unsure of diagnosis, it is almost unheard of in such a young child. It has come down to this neuropathy as to whether she has this at least in her drs mind. Her Rheumy felt she has too many symptoms for it not to be that, and something must be going on with the nerves for 2 tests to show something. Treatment is chemo, so this is a big deal, meanwhile she is getting worse in her lungs. Her drs don't know what expert opinion to believe. What do you think does this sound like neuopathy? What about sensory neuropathy what kind of pathology does it show? Who would you believe?
Doctor's Answer
by CCF-Neuro-M.D.-CS, Aug 18, 2003 12:00AM
Typically if a person has numbness as one of their complaints an abnormality can be found on the neurologic examination and EMG test. If the individual only has an alteration of pain sensations, then the testing may be normal. Churg-Strauss is as you have states an auto-immune disorder which affects blood vessels. This results in loss of blood flow to the nerves and the nerve dies. Therefore this would result in loss of axons, and a vascultic pattern on a biopsy (assuming an affected nerve was biopsied). The predominant finding in Churg-Strauss is the pulmonary problems. However it sounds like the doctors in Boston also could not find any abnormal vasculitis in the lung.
Given that it sounds as though your daughters pulmonary condition is the most severe ( and since I do not have the benefit of seeing her) I would assume that any decision regarding treatment would be determined by a pulmonary doctor. Sorry I could not help more. Good Luck
Given that it sounds as though your daughters pulmonary condition is the most severe ( and since I do not have the benefit of seeing her) I would assume that any decision regarding treatment would be determined by a pulmonary doctor. Sorry I could not help more. Good Luck
