My son Kyle is 13 years old. He started playing baseball at 3 was amazing playing on every team he could year round. By the age of 7 he started slowing down.Message 1 of 42 , Mar 4View SourceMy son Kyle is 13 years old. He started playing baseball at 3 was amazing playing on every team he could year round. By the age of 7 he started slowing down. I noticed all the other kids could run circles around him, he didn't have the quick reflexes that he used to and started leaning forward when he ran so he'd be faster. He started gaining weight and had extreme pains in his legs and feet. 6 years later and numerous Doctors telling him just to stretch and diet we finally were referred to a geneticist and he detected some abnormalities in Kyle's bloodwork pertaining to his muscle enzymes. After putting him on carnitine for 9 mo this nothing has changed and he wants him to go get a FRESH muscle biopsy, suspecting his has mitochondrial disease. He referred us first to Atlanta but its out of network for a insurance so I am looking into Cleveland Clinic. Any advise into getting to see a doctor there being from another state (Florida), setting up the visit and procedure all at one time would be greatly appreciated.
I agree with Sean wholeheartedly. We had a bad experience with Shoffner as well and he is really expensive, showed us that only cares about his research andMessage 42 of 42 , Mar 15View SourceI agree with Sean wholeheartedly. We had a bad experience with Shoffner as well and he is really expensive, showed us that only cares about his research and will do needless testing on your child in order to get more info for his research. This is MY opinion. I know others who really like him. But I would check out all your options before going forward. There are many blood tests and buccal swab tests that are not or very slightly invasive and can give a better diagnosis than a muscle biopsy, and much cheaper. In addition, I have been told that Children's Hopsital in Atlanta will no longer allow Shoffner to take samples or procedures with them. I do not know why.LisaOn Fri, Mar 15, 2013 at 12:28 PM, Sean Durity <seandurity@...> wrote:In my opinion, Dr. Shoffner is much more into research than patient care. He seems to fuel that with expensive and possibly unnecessary muscle biopsy testing. It is very hard to get any follow-up appointments about basic care after diagnosis. He used to work with Dr. Kendall, but there was a falling out between them. For our money, Dr. Kendall is much more concerned with the actual patients (and parents) and not just the science of it all. For example, if some testing would not lead to a change in treatment plan, she won't push it.We live here in Atlanta, and we won't go see Dr. Shoffner. Just one family's opinion.
--Sean DurityLatest blog entry: "Daddy Gotcha!""We are writing these things so that our joy may be complete." 1 John 1:4--
Lisa N. Higgins
The Ainsley Paige Higgins' Dare to Hope Foundation, Inc.