Hi! My niece is 1 yr old and only weighs 12 lbs. She has 20-50 seizures and infantile spasms a day. She cannot see well or focus on anything at all. She does not move, but seems to be rigid constantly and flexed. Her arms and legs are somewhat flexed and her hands are always in tight fists. Her forehead seems to bulge. She also has a skin condition which will cause a sort of yellow flaky oily result and her mother does an intense skin care regiment every 4 hours. She also has recently begun to grow pubic hair, which is an odd turn of symptoms. She has been seen at Children's in Minneapolis initially and was treated as if her mother was crazy to think any of these symptoms her real. Nice! Now she is being taken seriously at the Mayo in Rochester, but all of her doctors are stumped! They are trying to call an international syposium about her. And are trying to locate any world renowned docs that they can. She has seen genetecists, neurologists, cardio, peds, dermatologists, and many others I cannot remember. She has also started a "ketogenic" or "kinetic" diet that really seems to be helping with her rigidity, but everything else is still there. Please help! Forward this to anyone you think may help! We are desperate- we do not want to lose her!- Concerned AuntieReply Follow This Thread Stop Following This Thread Flag this Discussion
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