I'll give you history on her. First, she's an angel. The sweetest, most gentle little girl I've ever had the pleasure of knowing. I'm proud to be her mom. She's very shy, always has been. She's extremely intelligent. She's an honor student, and has never gotten any grade below a B. When she was 7y.o. she woke up one morning and jumped out of bed concerned about her little sister who was sick at the time. She then told me that her tummy hurt. We went into the bathroom to check her temperate, and I noticed her eyes were going back. I was saying her name, then she hit the floor. She was tremoring slightly and making gurgling noises. I called an ambulance, they took her to the local ER where they did a host of tests, and found nothing. I can't remember the term, but pretty much that she fainted because of getting up too quick regarding something in her stomach. I can't remember if the headaches started before or after that, but it was when she was 7. They weren't that bad. Motrin always did the job, and her Dr wasn't concerned because of their location. Two yrs later almost to the day, she had the exact same episode at school. Right after P.E., they were doing the crab walk. Took her to her Pedi, he said she had a post ictal look. She was very lethargic. She had an EEG, it was normal so once again, dismissed. Two times within the past few yrs, she's dropped. Legs buckled. One time she was right in front of my couch, and landed butt down on the floor. She laughed it off and said she missed the couch. Something similar while opening the refrigerator one day. Two weeks ago this Sunday she got a very bad headache, and her color vision was off in her left eye. She was seeing black, purple and blue. Took her to an Optometrist, all normal. Her Pedi ordered an MRI, last Wednesday. Chiari was found. I was scared, mortified, but it was all making sense. Everything that had happened in the past (even though there were few and far inbetween) had a cause. The research that I did all pointed to the Chiari. Now for her to be diagnosed with migraines, and a possible seizure disorder is beyond me. She didn't tremor last night. She actually felt great this morning, for the first time in almost two weeks. No Motrin or Tylenol. (: Even though she may only have a few symptoms, they, imo, all point towards the Chiari, and I don't have a PHD. I can't comprehend why all of these Dr.'s from all over the world are so against calling it what it is?!
There is not a doubt in my mind your daughter is an angel. I would recommend after reading your post that you get her pediatrician to refer her to a Neurosurgeon or Neurologist in your area. If you need assistance assuring they have Chiari experience please send me a Message and I will help you.
We met with her Neurologist for the first time this week. He’s the Director of Neurology at Cardinal Glennon childrens hospital, an Assistant Professor of Neurology. She has an appt with a NS in April, but they’ve already told me that surgery isn’t required for her. They would like to follow her until she’s 16 with yearly tests. Thank you so much for offering ! I just want them to validate that her symptoms are from Chiari, which isn’t happening.