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 the Clobazam may be causing the drop attacks, since it's the only new thing she's on? She siad no, so we'll be obedient and do what the good doc says.
Sending all the positive thoughts you way I can, too...
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 figure out what's going on. I hope that Chelsi will be ok. It's really discouraging for me. I just don't know what to do anymore. I really don't think there is anything more I can do.
Hope you have a blessed day!
Diana -
-- In Cent_Wa_Epilepsy_Support@yahoogroups.com, "SUE OWNBY" <s_042620@...> wrote: > > 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 swedish, but she's had 2 "drop attacks" in 4 days. Basically having a quick seizure and falling like a log. 1st time she fell so hard she put her elbow through our sheetrock (and she's only 75 pounds), 2nd time (Saturday), she fell off my friends deck backwards at lake roosevelt. I was hoping the 1st one was coincidence or she just fainted, but now she's done it twice....guess I get to call the doctor tomorrow and see what the heck we should to now. > > Epilepsy is never boring! UGH! > Sue > > ----- Original Message ----- > From: Missy T<mailto:missyat2001@... > To: Cent_Wa_Epilepsy_Support@yahoogroups.com<mailto:Cent_Wa_Epilepsy_Support@yahoogroups.com > Sent: Monday, June 30, 2008 10:11 AM > Subject: [Cent_Wa_Epilepsy_Support] Re: Roll call > > > 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 left Children's, but do not see under any > circumstances Dr. Morgan at Swedish... or maybe he will be better with > children from the area... he WAS bestest friends with the neuro that I > fired here in town. Kevin went to see him as a 2nd opinion, he didn't > even look at Kevin's file and also declared that quack in town right > (this was way before the declaration of cured), and that we had wasted > his time with seeing him (Morgan). He is rude, and yes we did waste > our time with him. > > I saw Saneto speak here in Spokane and that is where I fell in love > with his style. If Kevin could not get into see Saneto he would have > been seeing Sotero and we would not had a problem with that. > > We really like Saneto and really don't blame you for going to Sotero, > I have heard that Children's really cater to us people that ''fire'' > Spokane neuros!! But after 3 + years Children's nurse center knows I > just don't call to whine.... Kevin usually has a major problem. We do > have a back up emergency epi here in town but he won't take Kevin > until Kevin is 13 years old, so we wait. > > Missy >
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...
It's really discouraging for me. I just don't know what to do anymore. I really don't think there is anything more I can do.
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