My 11yr old diagnosed dermamyositis-High ck levels-any advice?
| Posted by alyn ® [to alyn], 2001/10/04, 07:45:55 |
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Hi my girl is 11-she ws diagnosed ten days ago with dermamyositis- BAD--for two years I have told drs of problems-muscle weaknes growing worse-purplish skin-growths on hands etc-
Even her lungs affected-drs assumed was asthma gave her an inhaler-
Finally I got MAD_the dr DID do blood work-but by then we found out a norm CK level is 60-100 HERS was 1500
NOW after week of iv-and pills predisone 4x daily-plaquinil mornings-soon methetrexate-BUT her levels keep crawling higher-
now it is 4800and I know from what I read the higher it gets the worse it is-
I know 0-please any helpany advice-
IS this a legal disability where I could get her full medicaid-si etc-it is costing so-I cant work she with this my son has CP he is 10-I feel lost-I am raising them ALONE totally- anyone out there for me?
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