Guest guest Posted June 30, 2011 Report Share Posted June 30, 2011 Hi Miriam, I also live near the Salt Lake area and I have a 2 year old daughter with PMG. I would also like to hear more about your appointment with Dr. Dobyns if you feel comfortable sharing. I have been thinking about taking Sirlei to him for awhile now. Best wishes to Wyatt and the rest of your family. Jodi Sent from my iPhone > We just saw Dobyns on June 16. He is a nice guy, he explained to us that Wyatt has the rarest form of PMG. (Don't ask me what it is because I don't remember.) > He went on to explain to me that although I live in Salt Lake and we have one of the best hospitals in the states Wyatt has been medically neglected. If they would have paid more attention they would have realized that many of Wyatt's symptoms have nothing to do with his PMG. I had always known that Wyatt was getting the short end of the stick, I just had never expected a dr to say it... > Sorry I wish I had more to say, but at this point we are still trying to digest the conversation. I just feel like I'm running out of energy. > Miriam-mother of Wyatt PMG, g-tube, wheelchair, seizures, vision problems > > Quote Link to comment Share on other sites More sharing options...
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