Do you have a child with EM?
We can help connect families and facilitate contact with other young EM'ers.
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Information and resources:
Coping with Chronic Illness in Childhood and Adolescence
I need some help! My six year daughter has had a bad couple of weeks with her EM. I was just thinking I need some help and was looking around the site. I was hoping someone out there could help with what they tried next. We have our daughter drinking lots of fluids and cooling packs as necessary. It got so bad her doctor started her on a baby aspirin but doesn’t seem to be helping. What has worked next for other children? We are seeing her rheumatologist next Friday and wanted to be able to bring up some options to talk to her about. She complains that she is getting hot and hurts all over…any suggestions would be appreciated!
Hi,
Just a thought you said your daughter is seeing her rheumatologist next Friday is that because she has rheumatoid arthritis? I have and my rheumatologist has recently found out that what I have as well is rheumatoid vasculitis caused by having rheumatoid arthritis, which is basically inflammation of the blood vessels.
I have had two infusions of Rituximab. It was done because I have loads of ulcers on my left leg the other one has been amputated recently. However, what a difference it’s made to my EM. So, just wondered you might want to mention this to him.
She sees both a rheumatologist and a neurologist that work together through Texas Children’s in Houston. When we were not sure what was going on, she gave tons of blood and was tested for every autoimmune disorder - they ruled rule them out. Then we had the diagnosis of EM. Both docs can not find any evidence of any other diseases/disorders going on…as the neurologist said, buy her a lottery ticket because she is either has the random mutation or inherited it from me. There is no doubt in my mind (or her doctors) that she has EM. I show signs too but don’t even want to go there right now…mine are tolerable so want her to be “happy!” I was just curious what was next…after the baby aspirin. She has a lifetime ahead of her so not sure I want to start “fancy” medication yet…what are the long term effects? I wanted to do some research to go into the appointment educated a little of different options.
I too had loads of tests that came up negative and at first they blamed nerve damage then poor circulation. Last year I suggested them could it be vasculitis and I was told it couldn’t! So don’t give up hope.