We 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.
If he feels like my forearms, he may feel like dough. I wish I could help him over the internet! But alas… You’re right — you can really scare yourself on the internet, so hopefully Dr. Francomano will be able to get to the bottom of his problems and you’ll be able to relax a bit. Has he started Cromolyn? That may help him until he can see Dr. F… Big hug, Diana