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Sorry this is gonna be another long one but I’m in research mode so look out. Ok I’m not a doctor but I research everything I can when one of my kids has problems. 3 out of my 4 kids have EDS as well as my husband and mother in law. I had found my daughter’s distal ulnar radial dislocation as explained on a website and promptly printed it out and presented it to the ortho . I wish I could’ve taken a picture of his face because I know he was shocked. This dislocation(the ulna from the radius) is rare without a break in one of the bones and very often missed in x-rays as it must be taken at just the right angle. Of course my daughter knew when her wrist was dislocated as any person would. Try telling them this when they cant’ see it in the x-ray . Just an FYI in case anyone would ever run into this. But again I’m off my main subject. In another post I wrote of my other daughter who is having ongoing headaches and sore throats. She complains of white spots and blisters in her throat. I can’t see down it no matter how hard I look but I have learned to listen as they have always been right in the past. Me I go on the internet now before going to the doctor. I know Dr. Diana thinks POTS and I will ask about that but I have come across some interesting info. I read of Eosinophilic Esophagitis and then wondered if it could be a mast cell disease. I found this info. on the EE:
http://www.cincinnatichildrens.org/assets/0/78/1067/2199/2317/11016399-fc11-49a2-a4bd-a0bfbf133376.pdf
Then I found this on the mast cell corelation:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2902643/
I always thought my daughter could have Celiac disease (mother-in-law does and I know alot with EDS that do too)and like I wrote in my other post was told a biopsy was positive but her Furrows were normal. I won’t get into that but I found this info that states they are thinking Celiac could cause the EE. :
http://www.celiac.com/articles/22784/1/More-Eosinophilic-Esophagitis-in-Children-and-Adults-With-Celiac-Disease/Page1.html
So unfortunately, if this is all correct, it’s all connected and I would assume stems from EDS . Like I said I’m not a doctor this is just my theory, but I thought Dr. Diana might be interested in this(if you don’t already know it). I find it fascinating but depressing. I hope I’m wrong quite honestly , but if I’m not and I got this right, at least we’ll be one step closer to finding answers for my daughter and can get her some relief. She was crying at dinner because she was so hungry but her throat hurt so badly. I found a pediatric gastroenterologist at CHOP in Phila. who deals with both Celiac and EE. I think we’ll start there. Wish us luck.
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