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?