Since Landon had had blood drawn in May because he was having leg pain and we wanted to make sure it wasn't due to raised CK levels or causing other issues such as cardiomyopathy, etc. Leg pain can be the first sign that his body is breaking down his muscles and using them for energy instead of the MCT Oil that he is taking for that..it is VERY bad, if not treated (D10 IV for a period of time), then it can cause Renal Failure and kill him. I explained all of this to the Geneticist and told him that the Genetic Counselor from Ft. Worth called them to ask them about it and where to get his blood drawn, I called, and the Ft. Worth Nutritionist called as well. He told me that he NEVER got a message or anything about it and knew nothing about what was going on...ummm, this concerns the heck out me, and is not acceptable. He was going to look into it and see what happened.
So, we don't have to go back and be seen until December 16th. So they have extended his visits in between to 6 months which is great. They are still thrilled that he has only been hospitalized once in his entire life...which is apparently unheard of.
His Regiment is as follows:
6 mL MCT Oil 4X day
6 mL Levo-Carnitine 2X day
1 DHA Vitamin 1X day
I'll leave you with some pictures of the kids playing in the pool:
E loved these little fountains and splashing in them.
I could not get him out of the water, he's like a little fish!
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