Thanks for the history! Is Dr. Sloop a neuro here in Yakima? When Chelsi was diagnosed, I just made a bee-line for Childen's in Seattle. We just recently moved to Swedish where she saw Dr. Sotero. He thinks she has some sort of Sodium Channel Mutation and her blood is getting tested right now. Would be nice to have a diagnosis. We don't know if she's progressive, whether she'll ever be able to have kids, or what. She's 14. She just got put on a new drug called Clozabam that we have to get from Canada. Is anyone else on this list on that?
I'm in Yakima. I was ORIGINALLY diagnosed way back in 1972, when I was 12. I'd been under doctors' care until 1996. A NEUROLOGIST, yes, a neuro, in Spokane told me that I "did not have, never had had, and never WILL have" epilepsy, and he yanked me off ALL meds overnight. He said I had hypoglycemia. He didn't run a new EEG, he based this on my OLD chart notes and EEG reports that had been clean For 9 years, I was the proverbial "accident waiting to happen" behind the wheel. Fortunately, that accident never happened.
In Fall 2005, the "hypoglycemia" got to the point that I wondered if that idiot in Spokane hadn't been wrong and if they weren't seizures. Within a couple weeks, I got in to see Dr. Sloop, and he put me right back ON meds -- complex partials. I remember vividly that first conversation, because he mentioned "it may take surgery to get them completely, 100% stopped." Little did I know.
I went back to school in January, 2006, and all was well. Until Friday, October 13th, when I had a grand mal (the only one I'd had since I had febrile seizures as a baby) in a conference. Two and a half months later, I had epilepsy surgery at UW. THIS Saturday is a year and a half since the surgery -- and I'm still seizure free.
I'm completely off the Keppra, and Dr. Sloop said we'll see about stopping the Trileptal at my next appt in December!
Mari
----- Original Message ---- From: SUE OWNBY <s_042620@msn.com> To: Cent_Wa_Epilepsy_Support@yahoogroups.com Sent: Wednesday, May 28, 2008 9:18:09 PM Subject: Re: [Cent_Wa_Epilepsy_Support] Roll call
Mari - Welcome back! I've got the memory of a goldfish, so please refresh my memory and tell me more about your history.
Hi Sue, It's been a LONG while since I've checked my Yahoo account. But I'm still here, even if I AM just about done with my Keppra. Dr. Sloop is weaning me off!!! The surgery was an incredible success -- as of Saturday, 17 months seizure free!!!! Mari
Hi Sue, It's been a LONG while since I've checked my Yahoo account. But I'm still here, even if I AM just about done with my Keppra. Dr. Sloop is weaning me...
I'm in Yakima. I was ORIGINALLY diagnosed way back in 1972, when I was 12. I'd been under doctors' care until 1996. A NEUROLOGIST, yes, a neuro, in Spokane...
Thanks for the history! Is Dr. Sloop a neuro here in Yakima? When Chelsi was diagnosed, I just made a bee-line for Childen's in Seattle. We just recently...
Dearest Sue, Kevin just started that med 3 days ago, did you get it from Mark's Marine Pharmacy? That is where it originated from. Clobazam/Frisium is in the...
... USA ... at ... not ... you travel 4 HOURS!!!! just to see a doctor for Kevin? That's love there. I have a hard enough time just getting across the water to...
Hello Missy! Glad to hear someone else is on the same drug! Chelsi's had good luck with it so far. Can't really tell that she's having any symptoms. She's...
Sue, We initially was to see Dr. Sotero, but ended up with Saneto. Kevin was in dire straits and it was scary having an idiot neuro tell us that Kevin was...
When Kevin started there we were initially to see Sotero, but heard that Senato and Sotero were "joined at the brain", they think alike. I thought that Sotero...
Hi Sue, Yes, he's in the doctor's plaza there on 11th/12th Sts. He's R. Richard Sloop. As far as meds, the only one I'm still on is Trileptal, and that may be...
I appreciate the info, Missy! Wish I could say that Chelsi was doing great, but she's not. She hasn't had a tonic-clonic since the day we came home from...
Sue: I'm sorry to hear about Chelsi. Claire has been have quite a few more seizures too, since Thursday. She had at least 7 or 8 yesterday. I just can't...
OMG Sue, The first few drops are horrifying, Kevin with a combo of absences, and jerks, and drops has a total of 15 seizures a day. The VNS is stopping about...
Thanks for your care and concern. Dr. Sotero is raising her new drug Clobazam (she also takes Keppra and Zonegran). I asked he nurse "isn't he concerned that...
That's a great way to put it. IT SUCKS!! I just pray to God this won't become the "norm". I'm a wreck having to face this in the first place. Strong on the...
Hi Sue: I know exactly how you feel. Everytime Claire has a seizure I get a little more depressed. In fact, the last 6 days have not been good for her and...
At least we know we're not alone! Chelsi had a drop seizure at her 2nd day of dance class list night. She seems to be getting a little more depressed as time...
i know the whole long time for checking your account. i'm just catching up on mine (it's very furstrating my computer whent in tobe fixed) so i been just...
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