Camden has been officially diagnosed with Limb Girdle Muscular Dystrophy. Dr Innaccone said that there are many different types under this category. Camden will have a XomeDxSlice (73 genes) test next to find out what is causing his. We have to have it drawn somewhere that tricare will cover because it is thousands of dollars to have done and tricare wont pay at Dallas. Once it is done they send it off to GeneDx lab and we will hear back in about a month. Dr I said unfortunately Camden is progressing faster than a 6 year old with Duchenne. She said with Limb Girdle heart and lungs are still involved and mortality depends on each individual case, their progressive nature and organ involment but that even the least severe dont live a normal life span. She suspects GI motility issues too and is referring him to a GI specialist. I filled out paperwork for the MDA as well so they will now be helping us and Camden will get a rep for school meetings too. Unfortunately, no meds or treatments are available. And there it is. We have an answer, not what we wanted but an answer. Keep our family in your prayers as we try to process this all.
Posted on: Wed, 20 Aug 2014 23:31:00 +0000
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