Introduction and need some suggestions

May 23, 2007

Hi, I'm and I am mother to Maggie a wonderful 3 yr old. Maggie

began having seizures last month and was diagnosed May 4th as having

epilepsy; she started Tegratol. She was then diagnosed on May 14th

(following an MRI) with CMI she has 5mm herniation. The second

diagnosis explains the mysterious symptoms she's had for a long time:

difficulty swallowing, tummy problems, ibs, clumsiness and earaches.

With the onset of the new seizures she began having headaches, and

started to complain that her legs hurt or they were tired (her doc

says she has lost significant strength on her right side) Maggie also

says she has the hiccups ~ only I can't see actual hiccups. Her ped

increased her dosage of Tegratol last Friday because her seizures have

not stopped completely.

Today was a tough one, through out the day her eyes would cross and

roll, she said her tummy felt funny and started gagging. Shortly

afterward she had to catch her breath three times kind of like

children do after sobbing only she hadn't been sobbing (maybe that's

what she means by hiccups.) During lunch my husband and I watched as

her eyes rolled around for several minutes, she never stopped playing.

I'm waiting to hear back from her ped about today. Could the seizures

be a symptom of Chiari? How quickly can these symptoms progress?

We live in Northern California and have Kaiser coverage. The

neurologist who called with the MRI results said she would recommend

that we have the surgery if the nsg suggested one. We have an

appointment for a second MRI (this one for her spine) on June 1st. A

first appointment with a nsg July 2 and a first appt with a

neurologist July 6th. Since there are no earlier appointments

available her ped. is relaying information back and forth. I was told

that Dr. Pang does the surgeries. Is anyone familiar with him? Is

anyone familiar with the way Kaiser works with requests to go outside

of the plan? Is it too late to change providers during my husbands

open enrollment period in July? Any guidance/recommendations would be

appreciated.

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