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son with dermatomyositis

son with dermatomyositis

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Posted by Carol on March 16, 2000 at 10:56:28:

My son was diagnosed with dermatomyositis when he was only 2 yrs old, immediately put on steroids and went into remission. At the age of 7 it came back and the steroids didnt work, he went to methotrexate.... this caused problems with the liver and mouth ulcers, folic acid seemed to help. Our doctor says the disease is NOT active at this time and that there is no reason for his lack of energy, except perhaps he is depressed. With that news, I do my best to keep him active and upbeat.... however, the doctor wants to keep him on the methotrexate.We simply do not have a good raport with this doctor, since he reminds us that he is the ONLY pediatric rheumetologist in the state. I would like to here from other parents that may have gone thru this. Also, my son has very bad contractures around his knees and elbows, which the doctor says are not there, he never has suggested PT for my son and when we lived in another state he was given PT twice weekly and did somuch better. I would leave the state except that another son i has Uvitis ans is going thru many eye surgeries at this time. Once again, the rhemetologist, suggest that the uvitis son needs to go on methatrexate also to control inflamation. I have to admit, I am terified of this drug, having watched how sick it made my older child. any suggestions out there? thank you


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