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paarak (@paarak)

Gastroparesis with severe symptoms!

Digestive Health | Last Active: Jun 25 11:08am | Replies (305)

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@sonyaparkey

Update: she is still miserable.The devastation of watching my 11 year old A honor roll student and all the extra activities widdle to NOTHING, have caused us health issues. As parents it is devastating when doctors refuse to take the pain "REAL"!!!!!!!!!!! We both started depression meds, high blood pressure meds, and he had a triple bypass he swears is due to this anxiety. Never a pill or problem in 50 years. A sick child and no doctor "ON OUR INSURANCE" will listen. We had a positive ANA Hepatitis and were referred to Scottish Rite who ONLY said she NOES NOT HAVE LUPUS. I travel 200+ miles every appointment. Insurance sucks. No specialists want to take us.

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Replies to "Update: she is still miserable.The devastation of watching my 11 year old A honor roll student..."

@sonyaparkey Sounds like Evans Syndrome ES to me. It is like Amyloidosis, but the protein in the blood shows up very late. ES hits kids any time from birth to 30. It shows positive for ANA, but will act like Lupus, often. Mayo and other top ones know about ES. But this may be a case for NIH Undiagnosed Diseases Program. NIH.ORG, I think. Some doc simple has to write a letter to them. You may need to call NIH to talk to them. But look on line first.

If your daughter does not have Lupus but has a lot of the same symptoms, could you ask them to test for Sjogen's Syndrome (Show-gren's)? It's another autoimmune system like Lupus, it's actually thought to be more common than Lupus, but it's not tested for in the typical Rheumatoid Panel. I addition to joint pain and fatigue and other Lupus-like symptoms, typical Sjogren's symptoms include dry mouth, eyes or skin. The body basically attacks the moisture glands. I was thought to have Lupus and had a positive ANA (not Hepatitis) and it took almost 6 years for an eye doctor to figure out I had Sjogren's. This isn't a diagnosis, just a suggestion. I'm on a Sjogren's discussion list and unfortunately, it's not unheard of for children, especially females, to be diagnosed with Sjogren's.

I wish you and your daughter the very, very best, Tracy