Guest guest Posted September 6, 2005 Report Share Posted September 6, 2005 I see you are a member of both groups too. It struck me when you said Maunhhauser (spelling-sorry). It was terribly heartbreaking because my family thought I could actually be hurting my son. He had all the outward signs of Maun. but the bloodwork did not lie. The bloodwork is the only thing that saved us. Our Pedi and the hematologist said repeatedly I could not make up that " abnormal " bloodwork. I wanted to blow that paper I talked about earlier from GeneDX and give everyone a copy. We are still trying to mend fences from that. This illness has more social problems applied to it than anyone who are not in the shoes could possibly understand. Clays fevers get high and he has the febrile seizures with them. He started talking around a year and had the " grand " seizure from a 106.6 fever. He stop talking and is still developementally delayed. He is almost 4 (November) and tested at a 26 month old. He is therapy twice a week hour of speech and OT. He always has " set backs " when he has a seizure. Tammy, Mother of Clay Quote Link to comment Share on other sites More sharing options...
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