yunnanababy
Experienced Poster
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My daughter had her surgeries in October 2009
Posts: 137
Indianapolis, IN USA
Gender:
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My 9.5 y/o is 3+ years post-surgeries (pial synangiosis) & for the most part is doing great. All her scans post-surgeries have shown adequate blood supply to both sides of her brain. She has the occasional "migraine-like" headache when she is not well hydrated (for her at 65 lbs. this is at least 64 oz. of fluid per day).
However, in the past 8 weeks, she has had two separate episodes of tongue numbness, combined with numbness on one side of her body &/or numbness in her thumb and fingers on one side of her body. The first episode, which also included severe headache, nausea & vomiting, landed her in the hospital, where she received both a CT Scan in the ED and later an MRI. Both tests indicated adequate blood flow and no evidence of new stroke or TIA.
She had a follow-up EEG a couple of weeks later to rule out seizure. We see her pedi-neurosurgeon next week to get the results, but my guess is that the doc would have contacted me by now if the test had indicated seizure activity in her brain, since it's been quite a long time since the procedure (original appt was rescheduled due to doc having an emergent case the same day we were to see her in early Jan).
Because my daughter responded well to IV fluids during the 1st episode, meaning her symptoms abated, the general thought is that she was just dehydrated. However, I have seen her dehydrated and I really don't think that's what caused the episode. On the other hand, there seems to be no better explanation of the symptoms.
The 2nd episode of tongue/digit/arm numbness was not accompanied by h/a, vomiting or nausea so we did not head to the ED. After discussing the next day with the nurse practitioner who works with my daughter's neurosurgeon, we think it was possibly caused by the stress of going back to school after a longer winter break. I'm curious to know if anyone else has experienced similar symptoms after a particular stressful time or incident.
I feel for all of you who face this or who experience it with your kids.
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