Anyone in Nevada with a child with epilepsy? - Mothering Forums

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#1 of 3 Old 09-05-2012, 03:39 PM - Thread Starter
 
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I am finding it near impossible to find an active epilepsy community online ANYWHERE for people in the state of Nevada. My daughter has tuberous sclerosis complex and epilepsy; she is 3. I know a lot about the disease, the options, and she's been through nearly every drug. We also do nearly every natural treatment as well; she's never had vaccines she is still being breastfed, she is on a low carb/GAPS diet, she takes natural supplements, she regularly goes to a chiropractor and getes craniosacral therapy..... She is currently only on Sabril but has been on as many as four drugs at one time. I have been trying for TWO YEARS to get my daughter accepted somewhere to see if she is a candidate for tuber (tumor)  resection surgery for epilepsy...there are places all over the country that do it, but no one outside our state will take her Nevada medicaid...i've tried SOOOO many places it would take too long to name them all. Trust me...NO ONE will take it. I had originally been told by a local pediatric neurosurgeon that she can do the surgery but this state doesnt have the technology to do the testing to find where her seizures are originating from (she currently for the last year has had complex partials but has had EVERY type of seizure in the past...)...but then I find out that they HAVE done this type of surgery at Sunrise Hospital in Vegas ,and they DO do intercranial EEG's...BUT...i called them and they don't work with kids and don't have any suggestions for any pediatric neurosurgeons who do. I just keep hitting dead ends EVERYWHERE. And moving isn't an option. I've looked into it, i just can't. Not that i dont want to...I would in a heartbeat if i could find a way. But i can't. There HAS to be something out there...I"ve tried every avenue and can't find a way. I am HOPING someone has gone through this same thing and can offer some suggestions or names or referrals...

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#2 of 3 Old 09-06-2012, 01:27 AM
 
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Seattle children's will take medicaid from other states, worth a try

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#3 of 3 Old 09-06-2012, 07:06 AM
 
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We are based in Florida, but we run an online community for epilepsy education and awareness. It is called EpilepsyU and it is 100% free! There are a lot of resources and other mothers online that can provide support and suggestions. Please check it out! http://epilepsyU.com. We will post this question (in part) to our Facebook feed as well (http://facebook.com/EpilepsyU), to help increase your response!

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