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Hi, my three-year-old inherited my EDS. It has hit her really hard. She has been in physical therapy for six months because at three, she could not jump or run. I have spoken to her pediatrician about my suspicion that she has high intercranial pressure; she sent me to a neurologist who wouldn’t give her an upright MRI. I’m wondering if there is a way to pay for one out-of-pocket? Any idea of a doctor who would consider ordering one? Her head circumference DID escalate quite a lot around the 10-month period with weight and height remaining on the same trajectory. Her eyes have the sundown effect; sometimes, she sleeps with them half open.
My laymen’s theory is that high intercranial pressure damaged my Hypothalamus when I was young, and this caused the problem with my Hypocretin/Orexin cells, rather than the traditional auto-immune response where the body attacks the Hypocretin/Orexin cells. I’m concerned about my daughter having similar problems.
Anyone have kids on Diamox? Or remember symptoms as a young child themselves?
Hi and welcome to the forum! I guess you know that my kids needed Diamox, although they weren’t as young as yours. I believe most doctors would let you pay for an MRI, but trying to perform a vertical MRI on a young child is nearly impossible because it is so difficult for them to hold still in that position. If you really need one, they generally sedate the children and perform it horizontally.
Hope that helps!
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