Guest guest Posted May 27, 2012 Report Share Posted May 27, 2012 Hi, My name is Amber, and my 5 year old daughter, Kaylie was dx with Chiari this past March. She currently has only had a brain MRI... but this Tuesday she will have a full spinal and Cine MRI. They will be checking for tether cord as well, as any syrinx. How we found out: Kaylie has had frequent headaches for the past year... and has the year has gone by, they have become daily. She also has daily eye and ear pain. Her other symptoms are: she is light & noise sensitive, sometime neck pain, VERY emotional, toe walker (not all the time... but at least half the time), clumsy... she runs into things, she has a pinky nail size spot on her back that has been there since she was born... it sit just slightly left of her spine, and in the thoracic & lumbar area...this spot is not seen all the time... it fades in and out... it will come up... get real pink, then fade away... lasting for about a week. During this time she complains of back pain. Kaylie has also started bedwetting. We live in Oklahoma... I have 2 other children... 7 yr & 2yr. I do plan to have them MRIed... I think my 7 yr old, probably has chiari as well... but not as many symptoms as Kaylie. All three are toe walkers.. my 7 yr old is the worst... she has gone through cast/braces.. and will walk flat sometimes... but not all the time... before her casts/braces... she was always toe. We currently have appointments with Dr Rekate & Dr Ben Carson in June. Quote Link to comment Share on other sites More sharing options...
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