forgot to add that we also go to the Shriner's hospital in Tampa every six months. We are currently awaiting new stuff for his power chair and will be making an appointment as soon as he gets these items added to his chair.
I would definitely recommend Shands. My son only sees the pulmonogist(Dr. Schuler) she is great and has experience with DMD. He also sees a cardiologist there but have only had one appt with him and I don't recall his name right now. We se a nuerologist here in tallahasse but would not recommend him.
Hi Nicole. I have been in and out of the site lately and just noticed that you son has the same deletions as mine, 45-52, right? I hope to keep in touch and have information regarding our deletions that I'll share if you'd like. I'll add you as a friend, so we can talk privately. I'll be in Florida next week, so I may not be able to get back with you if you do write, but I'll try soon. Take care. Michelle
Hi Nicole, I was glad to see your name pop up on my wall! Please do submit an application to us at Christopher's Community. This year we won't be doing our fundraiser because of the economy, but we are still able to provide some assistance, depending on the need. Take care!! Tracie
We live in Gainesville and we take our son to Cincinatti Children's Hospital to see Dr Wong. It is worth the travel. They have a comprehensive nueromuscular clinic there that specializes in treatment of Duchenne.
Hi Nicole. I have never taken Skyler to see a Doctor at the MDA clinic. I take my son to UF Shands in Gainesville to see the Neurologist there. Shands is awesome. The Dr.'s name is Edgard Andrade. You may also want to contact Nemours Children clinic in Orlando. They have specialty doctors there that treat kids with DMD.