He was healthy, although losing weight & the idiot pediatrician that we had seen since Tyler was born didn't show ANY signs of concern with weight loss.
I am talking about almost 1 pound per month until April when we took Tyler to Stanford for his Metabolic Dr. check up, they had their nutritionist come in & give us suggestions for additional caloric intake.
The G-Tube was not a consideration @ that point. Needless to say, when Tyler was hospitalized in May for non-stop seizures , shallow rapid Repirations; and upon arriving @ the ER no one had a clue why this was happening, we switched pediatricians , & started thinking that a G-tube may be a necessity . We were relieved to know of various options on how to place it, what types of "buttons" there were & most importantly, it is not permanent. He was hospitalized 2 weeks later w/o intubation & no seizures, just shallow rapid respiration. & severe lethargy. Labs drawn showed low kidney function, calcium & potassium. Thia was also the case 2 weeks prior. By the time the Dr.'s ordered his metabolic labs 3 all together all three came back fine. WTF! Of course they would he didn't get meds for 72 hours when they did the labs.
Plasma Amino acids norm, CSF norm, Sodium Benzoate levels norm. carnitine norm.
We suspected @ this time Sodium Benzoate toxicity & I had to fight some of the Dr.'s on why this should have been run the day we were admitted in June, but because I am not a Dr. they all thought I was crazy.
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