cantwaittoseemickey
DIS Veteran
- Joined
- Jan 10, 2005
When Ty had the muscle biopsy done, did they send it out for the ETC testing, or did they just run it through pathology? Ali's pathology report was "mostly" normal, too. She had some abnormal aggregates of normal appearing mitochondria, and if we didn't do the ETC testing, it would have been dismissed. But, the ETC was very abnormal. That plus significantly increased alanine pretty much sealed the deal, but then her genetic testing came back with a specific mutation, so we know it's primary. For Ali's constipation, we do bisacodyl and Go-Lytely, though we know we're looking at an ostomy in her relatively near future. We can't keep doing Go-Lytely on a continuous basis because it messes with her electrolytes. We're just trying to put off an ostomy until she can help care for it. Supposedly it has something to do with higher patient satisfaction.
Ty's biopsy says Right calf muscle, open biopsy: Partial atrophy of type I myofibers,rare.The neuro said that was nothing and it was normal.The ETC says everything was in the control range. All of his genetic testing this far has either came out normal or it is non specific.
I completely understand about the go-lytely and electrolytes. The amount of laxitives Ty is on has me a bit concerned. It just seems like his motility is getting slower. Yesterday he was bubbly with energy today he is back to being pale with circles under his eyes. I just don't get it
I think I need to talk to the ped about an order for sick labs.