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Are you sure they screened for everything. I am a little concerned that your Neurologist may not have the correct information or/experience when it comes to Mito. And by uggs lace up boots sale
no means am I saying that I suspect DJ has it, but in many cases it is not a genetic issue. It just happens for one reason or another. Unless a muscle biopsy has been performed and various other tests there is no way that she could know it. It is not something that is part if any type of basic screening. We have had to get the orders written by our Neurologist, sent to our Geneticist for more info and then on to insurance for approval. It almost always has to be pre approved and proven necessary to insurance. The testing is extremely expensive from what our Nurse case mangager has told me. Karsyn has yet to have the test done since I am uggs on sale black friday 2014
waiting to get into Cleveland. The other part of me is also sitting waiting for a miracle turn around that tells me we have to look no further.
I can really relate to how you feel. You don't want some horrible diagnosis, uggs jackets sale
but you do want to know what you are facing. It would be great to have a crystal ball to show you how things are going nordstrom shoes uggs sale to turn out a few years from now! I highly doubt your neuro would be taking this laxed approach if it were her own child. like they missed the pyloric stenosis, because we took such good care of him, he suffered for three and half years.
Does DJ have any other motor issues besides the swallowing and low tone in the neck and chest? Does he have spasticity or is everything else normal?
I totally get what you are saying about them missing something. Have they done an MRI since the one at 6 months? or an MRI of the neck? It sounds so focalized, why is everything centered there? as far as the weight loss, they all do that. Get sick and you go back to steps. When he is sick, it gets a lot worse and takes a week or so to improve again. Actually even muscle biopsies, the best way for diagnosing mito often miss 20 40% of case depending on how it is conducted (fresh vs. frozen). The Cleveland Clinic has a mito profile they use in addition to the testing. I would look on their website for information and maybe even ask some questions on the mito moms group here.
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