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stryderslist2Participant
Are these problems hard to notice on MRI’s? I ask because Stryder has several problems that we have known are going on in his brain and some have been fixed with seizure meds. The final say on the disc says no problem, but when we we at the Mayo, they pulled up a still that showed white matter and it was clear in the pic. Also cyst like things on the base of his skull. I have not doen very much research on the MRIs and EDS connection, just wondering if I should. I am so lost on how to help him.
stryderslist2ParticipantWe have not started him Cromolyn yet. I think his PCP is overwhelmed LOL. She did say she would, it’s a small office and actually I forgot to follow up on it. (When I call, the receptionists know me by phone number, but I like that!)
I’m glad to hear that you too have that doughy feel and yes, It is mostly on his forearms. It is so hard to explain to people, but once they touch, it’s such a great feeling. Sounds a little bad the way it comes out, but it’s just not normal.Crossing my fingers the results get here either today or tomorrow for the registry. I am so excited!
stryderslist2ParticipantWe have not, but he is not unusually tall and his arms are not longer than his height, so not sure. We do see Dr. Francamono in October. There is also another syndrome that I saw that involves the collagen as well but I can’t remember what it was. All I remember is that it scared me so I stopped looking LOL. He has what seems to be every symptom of EDS and all of it’s arms, but this one thing that is not usually seen in EDS from what I have seen. And with all of his tests, I would think that a heart issue would have been seen somewhere. He has had sleep studies, EEG’s, MRI’s, Endoscopies, Colonoscopies, plus every blood test you can think of (poor thing!).
Stryder’s body just feels so strange and I know that the velvet is EDS related but he is just so squishy, it’s hard to explain but once you touch and squeeze him, it’s hard to stop (he’s almost like one of those stress balls haha). My brother just discovered this the other day and he couldn’t stop pulling and tugging, and yes he has the stretchy skin, but it’s more than just the skin. It’s really hard to explain- and yet he is so skinny and bony looking so I think that’s why it’s even more surprising. His neurologist was just as intrigued saying he feels almost hollow.
I just picture his collagen so weak everywhere that it’s now affecting his chest too???? It seems as though his joints and elsewhere are getting so much worse, but I am starting to attribute that to his Mast Cells-but not sure. We started him on Zantec/Zyrtec and that has helped.
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