Last night went pretty well, but he did have another hour episode of a very high heart rate.
Yes that says 191. It's like he was running a marathon again. I could still get him to smile during the episode, but I feel bad for him when these stroke. Thanks Teri for leaving the information about Dysautonomia. That sounds highly likely due to the trauma of the surgery. Mike is going to ask the neuro today during his visit. They tested once for Mito, but I will talk to them again.
http://www.medicalnewstoday.com/releases/76785.php
I will update more after his doctor visits today.
2 comments:
I've been reading your blog forever, but rarely comment (maybe twice before).
I just wanted you to know that I am thinking of you, your sweet boy, and your entire family.
I know these last weeks have been a struggle - I am amazed with your grace under pressure.
xo
It's great that he had the monitor in while an episode was happening, maybe that can tell them something??
The thing with mito is, the tests aren't always reliable! And many Drs (Kendall's Drs included) end up not running all of the required tests! Reagan's had all of the blood work/genetic testing that is possible, they still can't find anything through that. Even her skin biopsy came back completely normal. But when they did her muscle biopsy, her pathology was also normal, but her enzyme testing revealed major issues with the mitochondrial complexes (they HAVE to do the enzyme testing but for whatever reason some drs don't order it or they do but send it somewhere that doesn't know how to perform the tests properly...FYI Baylor is the best)! So...there are many kids that have been "tested" and have presumable mitochondrial disease (many of which just have a blanket diagnosis of CP), but have never gotten verification via testing!
*Think mitochondrial disease when three or more organ systems are involved ...*
http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934631
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