A Proper Introduction

[Guest guest]

Hi, everybody! I learned quite a bit over the past 18 months since

our daughter's E dx, but this group leaves me in the dust! Am working

hard to get up to snuff.

Our story is a little different from some that I've read. In June

2003, she was dx'd w/Benign Occipital E & put on Carbatrol, age 8.

Made her learning struggles worse, & didn't make sense to me. Didn't

like the neuro either. I guess I asked too many questions. Switched

to Trileptal which bought enough time to get to a better neuro. He

ordered an MRI which was 'suspicious for mild Focal Cortical

Dysplasia.' It was redone under higher magnification & got same

reading, no more definite. Dx was revised. She has always controlled

at a fairly low dose of meds, but the side effects make learning a

nightmare for her. She goes toxic easily. Currently, she is on 150mg

lamictal, which we started in May and just before Thanksgiving got

somewhat regulated. We've had lots of struggles w/it,including

introducing a new sz type while controlling the old ones. At this

dose, she manages, but sleep is VERY light & irregular. Learning is

better than carbatrol, but attention is at least as bad or worse.

Overall, both occipital lobes are 'busy' all of the time. Am not

certain as I don't have the original eeg (just the report), but I

think the carbatrol worsenend it. An attempt to settle the EEG

coupled w/minimal cognitive side effects was the purpose of lamictal.

But, I think the sleep problems introduced w/that has caused other

difficulties. And, the VEEG in early Nov confirmed that the eeg has

not settled at all, and is worse in sleep.

Meanwhile, I was researching. I sent her data to Hopkins.(Yes,

Pillas). I knew surgery wouldn't be an option for many reasons, esp

since the szs are easily controlled. But, her quality of life is so

compromised. She knows how to read but the eeg is so busy she can

only read small amounts. It's tough to keep things straight. Wanted

in on the Atkins trial, w/the idea of going to keto if it didn't

work. They said they thought the daily szs I was seeing were part of

lamictal dosage, and regular szs weren't sufficiently documented. In

addition, they saw both MRI's and said they were normal. If anything

is there, it is so minor as to be not signficant. And, they don't do

much about subclinical activity, even a lot of it.

Our epi was Hopkins educated, & that was key to my choice. But, you

know how they can be. So, I gingerly asked him if we could try Atkins

at our VEEG follow up. Said I knew it was a trial, but could we

consider it if Hopkins gets good results in their current trial? He

said he has some kids on it, and yes, let's try. He still wants me

educated in the keto classes,etc. and put me in touch w/ the

dietician. She said to me, " Every child deserves the chance to be

seizure free and medication free. If Atkins doesn't work, there are

other options. I will storm the heavens with you. " What a delightful

approach. So, I'm preparing to begin my storm. We're starting Atkins

right after Christmas. Got my Rx for ketone papers and baseline

bloodwork. They don't monitor it as closely as keto, but are prepared

to consult on it. I must read the book first. And, of course, pray.

If we don't get the results we hope to see, I'll likely try keto

before surrendering to a lifetime of these meds. I owe that to my

child.

Caroline is now 10, and wants desperately to be able to think

smoothly, like everyone else. She's a happy and amazingly positive

kid who LOVES pasta. When I remind her that she won't be able to have

it on the diet, she says " But I might not have to take medicine. It's

okay, Mom. "

--Fran

[Guest guest]

Hi Fran,

Perhaps you're already aware of this, but I thought you might like

to know that there is also a yahoo group for those of us with

children in the Atkins study and others who are doing the modified

Atkins program for seizure control. The name is

atkins4seizures .

You can get lots of info and support from other parents experienced

with the diet and the Hopkins study on that board.

Good luck with the diet! It's been a blessing for my family, and

many others as well.

[Guest guest]

--

I was not aware of this. Thanks to you, I just joined and am soooo excited!

Am in the process of trying to learn all that I can so that we might be

successful.

As you know, other than Hopkins, this is not yet structured therapy. I have

been lucky to be placed w/a keto dietician who believes in it (both diets), and

is willing to assist. Hopefully, that will help me to pull my weight in the

sharing department! The idea of a group to help is so comforting!!!! You have

made my evening!! Merry Christmas!!

--Fran

[Guest guest]

Merry Christmas to you as well Fran. I look forward to " seeing " you

in the atkins group. Once you get access you might want to read

some of the older posts that talk about what its like when you first

start. There are also recipe files and other useful links available

to help you get ready.

Best wishes,

-- In ketogenic , bickelf@a... wrote:

> --

>

> I was not aware of this. Thanks to you, I just joined and am soooo

excited!

> Am in the process of trying to learn all that I can so that we

might be

> successful.

>

> As you know, other than Hopkins, this is not yet structured

therapy. I have

> been lucky to be placed w/a keto dietician who believes in it

(both diets), and

> is willing to assist. Hopefully, that will help me to pull my

weight in the

> sharing department! The idea of a group to help is so

comforting!!!! You have

> made my evening!! Merry Christmas!!

>

> --Fran

>

>

>