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Reply | Forward Message #686 of 894 |
Re: [Cent_Wa_Epilepsy_Support] Re: Roll call

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
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



Mon Jul 7, 2008 2:46 am

sue_ownby
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Message #686 of 894 |
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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...
Mari S
wabookworm
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May 26, 2008
7:10 pm

Mari - Welcome back! I've got the memory of a goldfish, so please refresh my memory and tell me more about your history. Sue ... From: Mari...
SUE OWNBY
sue_ownby
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May 29, 2008
4:18 am

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...
Mari S
wabookworm
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Jun 27, 2008
4:39 am

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...
SUE OWNBY
sue_ownby
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Jun 28, 2008
3:30 am

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...
Missy T
missyat2001
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Jun 28, 2008
5:45 pm

... 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...
Deborah
angelicarcher12
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Jun 29, 2008
7:54 am

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 OWNBY
sue_ownby
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Jun 29, 2008
1:35 pm

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...
Missy T
missyat2001
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Jun 29, 2008
2:32 pm

HA! Sotero is who she's seeing now. Saneto is who we waited forever to see... Which one has done better for Kevin? Sue ... From: Missy...
SUE OWNBY
sue_ownby
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Jun 29, 2008
10:06 pm

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...
Missy T
missyat2001
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Jun 30, 2008
5:11 pm

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...
Mari S
wabookworm
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Jul 5, 2008
4:15 am

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 OWNBY
sue_ownby
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Jul 7, 2008
2:46 am

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...
savedbygrace77777
savedbygrace...
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Jul 7, 2008
2:05 pm

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...
Missy T
missyat2001
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Jul 7, 2008
5:59 pm

I'll keep my fingers crossed for you! Sue ... From: Mari S<mailto:wabookworm@...> To:...
SUE OWNBY
sue_ownby
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Jul 7, 2008
2:46 am

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...
SUE OWNBY
sue_ownby
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Jul 8, 2008
2:19 pm

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...
SUE OWNBY
sue_ownby
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Jul 9, 2008
4:50 am

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...
savedbygrace77777
savedbygrace...
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Jul 9, 2008
12:30 pm

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...
SUE OWNBY
sue_ownby
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Jul 10, 2008
8:15 pm

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...
Deborah
angelicarcher12
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Aug 20, 2008
11:14 am
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