Dawn
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My daughter definitely had headaches, fatigues, Seizures, weakness, crying and hyperventilating.........I started taking her to the dr. with my concerns at the age of 12 mos. My concerns were dismissed several times........I finally insisted on a pediatrician appt. and an EEG at our local hospital........EEG came out fine.............my concerns were dismissed. She continued to have headaches...what we now know were TIA's etc at daycare...several more trips to the local dr., pediatrician refused to see me........then the ER dept.--finally I emailed a clinic in Toronto ON, then was seen by a pediatric neurologist........had another EEG--which was normal........finally she was diagnosed at age 6........had 2 surgeries, a stroke after each surgery............she continues to have an occasional headache, some abnormal movements, few to no TIA's. WE are now 2 years post stroke, and post surgery.........she is progressing very well and has recovered well from strokes.........some limited left hand movement and her swallow--is going to be assessed soon. I have learned to listen to my daughter's symptoms and trust my instincts.........all moyamoya cases are unique......but definitely fatigue, hydration, headaches, weakness, abnormal movements, "dizzy, tingly" sensations seem to be quite universal among Moyamoya patients. ofcourse we feel blessed/lucky that our child is doing so well.....but being ignored, feeling helpless as a parent early on was the biggest frustration in dealing with this disease.
Dawn
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