Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 Hi, I am a mom to a little girl named Pernille and we live in Norway. we call it silver-russel over here. The doctors at our hospital have after over a year finally come with a name of what they think is wrong with my doughter. The problem here is that noone has ever heard about this. And i found this site and so happy that I am not alone. I feel a little alone in this....... and wondered it anyone has experienced anything that we have. Pernille eats well but is not gaining much waight. She turnes 2 in october and is only 74 cm and 7,8 kilos. i have a feeling that everyone has problems with eating and keeping the food down, reflux.... is this so? The 11 of august we are going to the hospital to do the bone x-ray, take a sample of the spinalfluid, musclebiopsy, MR of her head. We have alredy done hormontest and are waiting for a new in september. She has low blood suger. She was small at birth, only 44 cm and 2,5 kilos, she was fullborned. Sorry my language, its alot of hard words to translate. Hope anyone are in my shoes. Love Stine mom of Kristoffer 4 years and Pernille soon 2 years. Quote Link to comment Share on other sites More sharing options...
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