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Roll Call for our list!   Message List  
Reply | Forward Message #594 of 894 |
Re: Roll Call for our list!

I'm Becky living in Bellingham. I have 3 children, a 5-year old
daughter, a 3-year old son, and a 5 month old daughter Madalynn who
has been having seizures for 2 months.

It seems everyone is so up on the terms associated with seizures, but
I'm pretty ignorant about it all. I've never met anyone with seizures
or really heard about them let alone seen one until Madalynn had her
first. Let me tell you how scary that was.

She's had 2 EEGs done and an MRI. The MRI showed her cortex on the
left side is larger then the cortex on the right. This is called:
Hemimegalencephaly. I'm trying not to read too much about seizures
because the more I do the more worried I become. I just want to talk
to other moms I guess so I don't feel so alone.

Madalynn is about to start her 3rd medicine to control the seizures
if it doesn't work then we may have to consider surgery. She has
seizures that are short they last about 1 1/2 mins. So thankfully she
doesn't have the grand mal(?) seizures.

I learned about this forum through Swedish Hospital in Seattle while
visting the doctor there. It's been hard having to travel around 3
hours round-trip to visit the doctor each time. But I just wanted you
to know that word is getting around about your group!




Sun Apr 6, 2008 5:53 pm

greenfruit430
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Message #594 of 894 |
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Welcome! We have several new people who have joined our group, so I thought perhaps we could do a little roll call? I'll start, since I started this list...
SUE OWNBY
sue_ownby
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Apr 6, 2008
5:38 pm

I'm Becky living in Bellingham. I have 3 children, a 5-year old daughter, a 3-year old son, and a 5 month old daughter Madalynn who has been having seizures...
Becky
greenfruit430
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Apr 6, 2008
5:54 pm

//I'm trying not to read too much about seizures because the more I do the more worried I become// I can certainly empathize with you on that one! I, on the...
SUE OWNBY
sue_ownby
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Apr 6, 2008
6:05 pm

I guess then Madalynn does have the grand mal she does the jerking with her legs and arms. Her eyes go off to one side and she's unresponsive. I thought that...
Becky
greenfruit430
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Apr 6, 2008
8:52 pm

My step-son is the one with epilepsy. He’s 37 years old, was diagnosed when he was 12 and they’ve been uncontrolled ever since. He’s currently on 3000 ...
Sherry
sherdh
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Apr 7, 2008
1:15 am

Becky ~ I don't blame you for not wanting to know....just make sure you know "enough" to always have her best interests at heart. Things pretty much changed...
SUE OWNBY
sue_ownby
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Apr 7, 2008
2:14 am

I know what's he's going through. I'm 29 and I started having seizures when I was 5 years old and still have them. I even had a right frontal craintomy in...
Joellen Bley
joellenlb
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Apr 7, 2008
2:23 am

Hello, I have two children a 14-year old son, Keith and an 11-year old daughter, Christel. Christel was diagnosed March 07, at age 10, with petit mal seizures....
Louisa Johnson
laj4792
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Apr 7, 2008
3:40 pm

I joined this group a while ago but I don't often participate in the discussions. I do enjoy reading and learning from everyones experiences. My daughter is...
Becky Kolln
beckysmail2
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Apr 7, 2008
6:11 pm

I'm heading to Children's Hospital in Seattle for a support group on May 10 from 10am - 12pm. It's the first one that I'll attend so I don't know how many...
Becky
greenfruit430
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Apr 7, 2008
7:03 pm

Hi Becky, The group on 5/10 is for parents of children with epilepsy. However, childcare will be provided, and the kids will have an opportunity to play with...
Mineko Sterling
mineko_from_...
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Apr 7, 2008
7:34 pm

Hi Becky, We don't have a support group for kids, but we have a summer camp for kids with epilepsy and their siblings. It'd be a great place for your daughter...
Mineko Sterling
mineko_from_...
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Apr 7, 2008
7:26 pm

I also joined this group a while ago, but rarely post. I am Missy and I am from Spokane. We do however, go to Seattle for Dr. visits as I fired the neuro here....
Missy T
missyat2001
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Apr 7, 2008
8:16 pm

In answer to the "roll call"... My name is Lynn and I don't often respond to messages on this list, because most people on it seem to be a parent, spouse, or...
LMEvans926@...
lllynn01
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Apr 7, 2008
8:00 pm

Hi! My name is Bonnie and our family lives in Monmouth, OR. Our seventeen year old daughter, Blair, was diagnosed at one year old with Lennox-Gastaut syndrome....
Bonnie Shonholtz
blairinspira...
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Apr 8, 2008
12:50 am

I so know how you feel, Louisa! We have a lot of the same problems. Keeping our children safe and "letting them live their life" is extremely difficult! As...
SUE OWNBY
sue_ownby
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Apr 8, 2008
3:38 am

Firstly, let me just start by saying I am sorry to hear you daughter had to suffer another seizure. It is most difficult because the seizures didn't start...
Louisa Johnson
laj4792
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Apr 8, 2008
4:41 pm

Sounds like you and Zully have something in common! That's exactly why I asked for the roll call.......... :o) ... From:...
SUE OWNBY
sue_ownby
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Apr 8, 2008
3:41 am

Hello there, I am Candice and my daughter Emily was diagnosed with complex partial epilepsy when she was two. She is now 5 and we are still dealing with on...
Candice
candy_lou81
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Apr 8, 2008
3:41 am

... perhaps we could do a little roll call? ... actually intended to be a way for a small group of us Yakima people to communicate, since our monthly meetings...
Candice
candy_lou81
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Apr 8, 2008
3:41 am

Mineko had a great idea for the kids site. I'm going to check it out! Sue ... From: Becky Kolln<mailto:beckysmail2@...> To:...
SUE OWNBY
sue_ownby
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Apr 8, 2008
3:43 am

If I had a dollar for every time Chelsi's seizures changed, I'd be a rich woman! Every time I think I have it figured out, something changes. Sucks, too! Sue...
SUE OWNBY
sue_ownby
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Apr 8, 2008
3:43 am

If LGS didn't have an eeg signature, I would swear my daughter had it. One of the questions I already had on the list for our first visit to Swedish in June...
SUE OWNBY
sue_ownby
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Apr 8, 2008
3:46 am

Sue, It was recommended by the school district to have Blair tested for autism when she was five. Between the seizures and unusual behavior in nursery school,...
Bonnie Shonholtz
blairinspira...
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Apr 8, 2008
5:11 am

I guess I missed "Zully's" response? I'm not sure who that is. Lynn In a message dated 4/7/2008 8:41:24 P.M. Pacific Daylight Time, s_042620@... writes: ...
LMEvans926@...
lllynn01
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Apr 8, 2008
4:34 am

Sleepovers have been very interesting! Chelsi either has someone over or she goes somewhere every weekend. I live in total fear of getting "the call"....
SUE OWNBY
sue_ownby
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Apr 9, 2008
2:09 am

Unfortunately, the few parents I did speak with, didn't want the "burden" as they bluntly put it, so of course the blame of telling Christel she couldn't spend...
Louisa Johnson
laj4792
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Apr 9, 2008
2:23 pm

I'm going to follow up on autism...sometimes I jokingly accuse my daughter of acting like she's had a lobotomy.... ... From: Bonnie...
SUE OWNBY
sue_ownby
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Apr 9, 2008
2:12 am

Follow your gut instincts. If you feel her care is not appropriate, either hound them until you get what you want, or move on! That's what I'm doing, and I...
SUE OWNBY
sue_ownby
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Apr 9, 2008
2:15 am

A "burden"?? That just gripes me! Keep looking, because good friends with parents that have brains are out there.... I wish I could say the same for Chelsi's...
SUE OWNBY
sue_ownby
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Apr 11, 2008
2:54 am
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