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No he has not had either done. We go back on May 25th to see the thoracic specialist (3+ hours away) and he will do a treatment plan then, so maybe??? I have a lot of questions for him. The geneticist is also with Shriners that Stryder’s DR. will be talking with and getting back with us. We saw a geneticist at the Mayo clinic originally, but I don’t’ think we will be going to OHSU for genetics. I haven’t heard the best things about OHSU and especially EDS related.
I am glad we are going to Shriners-they seem to be caring and thoughtful and wanting to help us. We have been so very lucky with treatment and not had any problems like most do and I’m not sure exactly why. I think it is because it started with Stryder not being able to talk and now he is so loose and feels so strange to the DR.’s and then he ends up getting strange reactions to things, rashes, etc. The Dr. said that I will know more than most Dr’s and that I need to be the advocate, so no putting me down or anything I said at all, just reassurance that I am doing the right thing.
I’ll make sure to ask the thoracic specialist about those tests. Thank you 🙂