Re: A Proper Introduction/Fran

[Guest guest]

Your story is similiar in many ways to ours, only it took us much

longer to get to keto. Every drug gave my son new seizure types,

and as we raised the doses, a worsening in frequency. Keto gave us

a chance to get him off meds, and what a difference it has made. In

fourth grade he couldn't write a senctence and failed his state

writting proficiency exam. This year, on keto he is a new kid, and

he recently earned a spot on the coveted school newspaper team.

Things have gone so well for him, that we started wondering if he

even needed keto anymore, though no one had gone so far as to

suggest weaning the diet. Some recent shaking spells and getting-

stuck-on-verbal-phrases sent us back for an EEG and blood work. The

EEG was only slightly irregular in two one second spots. His nuero

said it was enough to show that he probably still needs keto. But,

overall, the EEG was so good (And we've had some terrible ones) that

the Doctor predicts he will outgrow his seizures. Such good news.

The diet was very hard for my son to start. And that is an

understatement. Detox, too, was heart wrenching. My son developed

stress related episodes every bit as dibilitating as seizures. The

thing that finally cured these episodes was when my son finally

accepted the diet, and that happened when he started school this

Sept. (He had missed the last two months of 5th grade.)

Immediatly, he saw what the diet meant as far as clearing his mind

and making school fun, again. The freezing episodes stopped. At

Thanksgiving he wrote in his school journal that he is thankful for

the ketogenic diet.

I'm tellling you all this, because he is older like your

daughter. It is really tough for them, but with that motivation to

clear their minds of meds so school isn't so hard, they can do it!

If your daughter wants a letter from my son, let me know. He is a

writting maniac, now (well, sortof).

I hope the Atkins works!

Gretchen

>

> 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]

In a message dated 12/16/2004 2:39:42 PM Eastern Standard Time,

gretchen_kissock@... writes:

> Your story is similiar in many ways to ours, only it took us much

> longer to get to keto. Every drug gave my son new seizure types,

> and as we raised the doses, a worsening in frequency

Gretchen,

Your post is so welcoming! The carbatrol was just plain awful. I think there

is some dysgenesis which would give her perceptual difficulty no matter what

(Kossoff at Hopkins said no & wouldn't put her in the trial). But the carbatrol

aggravated everything, esp the EEG. That EEG coupled w/what the drugs did

made life a nightmare.

It was the lamictal that introduced the new ones. I was beginning to make the

connection. Took the dr days to get back to us. He was saying to raise by 25

mg, but I was only going up by 12.5. That made it easy to see, actually. So, I

just stopped asking him when I was convinced and lowered it until I was

afraid to go lower. And you are so right about the attention problems it

causes...and anxiety. What a mess.

Does your son have c/p's? I know they profile to have the least success w/the

diets. But, I really think we need to go after the EEG. The lamictal hasn't

done it. I must try the diets. She is owed the opportunity to be seizure free.

It is not a cure all. But, before the drugs, she was learning disabled and

making light years better progress than on the drugs.

I may very well take you up on that letter after the holidays. Am so glad

your son's quality of life is so improved. The only thing I can offer in

exchange

is lots of info on teaching kids w/dyslexia & dysgraphia. So, I can

confidently say your son can learn to write just fine. I found one of the best

teachers

in the US...we use her book and consult w/her via e-mail now that we are

working on expository writing. But, she is the one who taught my daughter how to

write in cursive 1 1/2 years ago. It is designed for grades 4 to 8 and is

inexpensive. The teacher is H. King. Do a search if you're inclined.

Thank you again, so very much. It's so encouraging when someone understands

what you're trying to do, and has done it w/success!

--Fran

[Guest guest]

Sorry, I am reading haphazardly because my daughter is in the hospital

(yes, the seizures have returned, although so far, knock on wood - my

head - they don't seem quite as bad), but were you also the one that

mentioned sleep seizures in an earlier post? There is a type of seizure

disorder that tegretol (isn't that carbatrol?) makes worse. Its called

EESE (or something like that) and the child is having seizures

constantly in their sleep that can't be seen. Anyway it was a thought

that struck me from a previous post a day or two ago, but I am not sure

if it was you. The way to diagnose is an EEG when child is asleep.

BTW about diet having least success with complex partials, thats not

really what I have seen on this board or on the old squish board. They

use to say that the diet didn't work on them, turns out it hadn't been

tried. That was years ago. It was the only thing that gave any control

to our daughter who has complex partials that secondarily generalize.

And each kid is so different, you could have the " perfect " seizure type

for the type and not have success. So I wouldn't worry about the c/p

designation

, 's mom

bickelf@... wrote:

> In a message dated 12/16/2004 2:39:42 PM Eastern Standard Time,

> gretchen_kissock@... writes:

>

>

> > Your story is similiar in many ways to ours, only it took us much

> > longer to get to keto. Every drug gave my son new seizure types,

> > and as we raised the doses, a worsening in frequency

>

> Gretchen,

>

> Your post is so welcoming! The carbatrol was just plain awful. I think

> there

> is some dysgenesis which would give her perceptual difficulty no

> matter what

> (Kossoff at Hopkins said no & wouldn't put her in the trial). But the

> carbatrol

> aggravated everything, esp the EEG. That EEG coupled w/what the drugs

> did

> made life a nightmare.

>

> It was the lamictal that introduced the new ones. I was beginning to

> make the

> connection. Took the dr days to get back to us. He was saying to raise

> by 25

> mg, but I was only going up by 12.5. That made it easy to see,

> actually. So, I

> just stopped asking him when I was convinced and lowered it until I

> was

> afraid to go lower. And you are so right about the attention problems

> it

> causes...and anxiety. What a mess.

>

> Does your son have c/p's? I know they profile to have the least

> success w/the

> diets. But, I really think we need to go after the EEG. The lamictal

> hasn't

> done it. I must try the diets. She is owed the opportunity to be

> seizure free.

> It is not a cure all. But, before the drugs, she was learning disabled

> and

> making light years better progress than on the drugs.

>

> I may very well take you up on that letter after the holidays. Am so

> glad

> your son's quality of life is so improved. The only thing I can offer

> in exchange

> is lots of info on teaching kids w/dyslexia & dysgraphia. So, I can

> confidently say your son can learn to write just fine. I found one of

> the best teachers

> in the US...we use her book and consult w/her via e-mail now that we

> are

> working on expository writing. But, she is the one who taught my

> daughter how to

> write in cursive 1 1/2 years ago. It is designed for grades 4 to 8 and

> is

> inexpensive. The teacher is H. King. Do a search if you're

> inclined.

>

> Thank you again, so very much. It's so encouraging when someone

> understands

> what you're trying to do, and has done it w/success!

>

> --Fran

>

>

>

[Guest guest]

It's called ESES, basically it's status during sleep. Not always obvious if

you are observing the child, you need an EEG to diagnose. I wasn't aware

that Tegretol makes it worse, but I'm sure it could. In my son's case,

Tegretol brought out his myoclonic seizures when we started him on it. We

discontinued the med but the myoclonics stuck around, unfortunately.

Barb Swoyer, Jake's mom

Re: Re: A Proper Introduction/Fran

There is a type of seizure

> disorder that tegretol (isn't that carbatrol?) makes worse. Its called

> EESE (or something like that) and the child is having seizures

> constantly in their sleep that can't be seen. Anyway it was a thought

> that struck me from a previous post a day or two ago, but I am not sure

> if it was you. The way to diagnose is an EEG when child is asleep.

[Guest guest]

--

You are wonderfully encouraging.

We just had a VEEG in mid Nov due to all kinds of weird things brought on by

lamictal. She had no seizures in sleep, but had one of her 'nightmares' while

we were there. I was glad to learn that it was just that, not a sz. She never

really had szs in sleep. However, they verified that there is a lot of

subclinical activity all of the time, and that it increases in sleep. I've

always

been told that is the nature of a partial seizure syndrome.

In doing my own research for the past 18mos, I read that there was evidence

that carbamazepine made subclinical activity worse in a PubMed article. I

believe it happened in our case. Did not ask our current neuro when I read it,

as

he wasn't the original prescriber and he has a way of getting annoyed when I

ask him too much. So, when we discussed the VEEG, and the fact that the lamictal

did not settle her EEG at all, I was shocked when he said " There is some

evidence that carbamazepine aggravates it. " They seldom tell you that stuff.

I didn't bother to get him to elaborate. Was more interested in getting him

to consent to us trying the diets, which he ultimately did!

--Fran