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Biopsy

Does anyone out there know of any who will perform a needle biopsy or "Punch" biopsy? I found out from the renowned Dr. Eric Hoffman that full blown muscle biopsies are not necessary any longer and that all required to gain a good sample is done through the punch biopsy. Dr. Leshner, at Children;s in DC has done nothing more than give us the run around about this procedure. He dais he used to do them all the time when he was on staff at a hospital in Richmond. The best care for our son - Dr, Leshner is way to overworked to even care about our sons. His lack of "getting things done" is extremely compromised and he delivers nothing more than lip service, in our opinions. It's almost like, well your son will die so why rush into anything. My son is now 9 and in perfect health. Continually, he runs, jumps, swims, rides horses and plays all day. Not only that, he is an excellent student in school. According to Dr. Hoffman, boys with DMD do not run at age 9. Our son does. They are about to begin the exon skipping trials and our son will be unable to get on if the biopsy is not done and why do the full blown thing if just a punch is needed? We are so incredibly unhappy with the treatment at Children's in DC. Dr. Leshner is just way too overworked to even give a damn.

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Permalink Reply by irishgirl on April 26, 2009 at 7:56am

This is the trial currently recruiting in Columbus, OH - it is a gene delivery trial using viral vector (AAV---Adeno Associated Virus) carrying a modified dystrophin gene. This is being done with intramuscular injection. The injection is what, I think, would keep me from enrolling my child. We already know that in the UK - other trials with direct injection into the muscle is very promising. This trial will only work on which ever muscle gets the injection. Once they figure out how to deliver a positive result yielding IV dose - that will be something. I am weary of having my son on this trial because they cannot inject all muscles in the body. We know it works - but we need systematic delivery rather that injections. Just because your child is in one study with very positive results, they will be just flow into a more effective study. Many trial exclusion criteria say your child can not have been in a previous trial of the same sort. So, we all must think long and hard before jumping to get on a particular trial.