My sweet Noah, break through seizure : (

October 28, 2004

Hey all, this is one of the saddest posts I have ever had to write!!

This morning Noah had a grand mal seizure- completely out of left field for us

as he has been seizure-free for almost 8 months now- since March 5, 2004. His

last t/c was January 10, 2004. He has been on the ketogenic diet since March 2,

2004 and med-free since July, 2004. His last EEG was 1 month ago and it was

absolutely normal as a normal person could be.

Don't know really much right now- still in a fog here... I always have the baby

monitor in his room and this morning while we were all still sleeping at 6:45 AM

I heard him " squeal " and if you have heard this before a seizure before, then

you know what I am talking about. I don't even remember making it up to his

room- I was there and he was having a t/c. It lasted less than 3 minutes and he

was fine- slept it off for about an hour and woke up like nothing happened. He

has been fine all day- maybe some slight hyperactivity/behavior issues, but

that's about all I've noticed. I took him to the pediatrician this morning and

he has a slight ear infection in one ear. He is now on Amoxicillin capsules and

we (family, doctors, etc) are hoping & believing it's just caused by the

infection and won't happen again... as for the diet- I can't imagine any way

that something could have snuck in- I am always with him- he is so good on the

diet- doesn't try to cheat- never gave me reason to doubt

anything in the past couple days... only thing is that he now brushes his teeth

3 times a day now instead of the previous 2 times a day and maybe he's getting

too much toothpaste? (Keto-friendly Tom's of Maine spearmint). We have all had

colds here at the house the past week & a half, so the infection thing could

very well be it.

Of course this is super disappointing and I am in the weirdest of states today,

but I have to say I have never let my guard down with him. Even though it had

been almost 8 months seizure-free, I never took that for granted. I feel so

blessed that we had that long of a reprieve!! I do have faith and believe that

we can beat this again- this was just a little attack, hiccup, whatever you may

call it. But, thank God we have already been through this and we know what to

do, know how to be strong, and know this is not the end of the world (as I had

previously thought the 1st time around!!). Next month will be the 1 yr

anniversary of his 1st seizure. Such odd timing!!

I do appreciate all your prayers and support and any suggestions you may have

for me! I feel so safe and comforted that I have all of you here to come to! I

will keep you posted...

Mom to Noah- age 3, med-free, & had his 1st seizure in 7 1/2 months today, on

ketogenic diet

October 28, 2004

Oh, . I am soooo sorry. = ( I know that stomach in your

throat feeling. I HATE szs!!!

It is such a positive that he has gone 8 months, and I am so glad to

hear the positive tone in your message. You are right- the odds are

REALLY good that this was some sort of hiccup. I am betting that it

was the infection and not the toothpaste, although even Tom's

toothpaste has some carb. After Langan's experience earlier this

month, I am a firm believer that sickness can really bring on the

seizure monster! So here's hoping sweet Noah stays healthy, happy

and SEIZURE FREE for the next 50 years!!

Hang in there and know your keto friends are all thinking of you

guys!

, mom to Langan, 2 yrs old and keto kid 11/03 through 9/7/04,

weaned due to persistent metabolic acidosis but keto kid at heart

forever

> Hey all, this is one of the saddest posts I have ever had to

write!!

>

> This morning Noah had a grand mal seizure- completely out of left

field for us as he has been seizure-free for almost 8 months now-

since March 5, 2004. His last t/c was January 10, 2004. He has been

on the ketogenic diet since March 2, 2004 and med-free since July,

2004. His last EEG was 1 month ago and it was absolutely normal as a

normal person could be.

>

> Don't know really much right now- still in a fog here... I always

have the baby monitor in his room and this morning while we were all

still sleeping at 6:45 AM I heard him " squeal " and if you have heard

this before a seizure before, then you know what I am talking about.

I don't even remember making it up to his room- I was there and he

was having a t/c. It lasted less than 3 minutes and he was fine-

slept it off for about an hour and woke up like nothing happened. He

has been fine all day- maybe some slight hyperactivity/behavior

issues, but that's about all I've noticed. I took him to the

pediatrician this morning and he has a slight ear infection in one

ear. He is now on Amoxicillin capsules and we (family, doctors, etc)

are hoping & believing it's just caused by the infection and won't

happen again... as for the diet- I can't imagine any way that

something could have snuck in- I am always with him- he is so good

on the diet- doesn't try to cheat- never gave me reason to doubt

> anything in the past couple days... only thing is that he now

brushes his teeth 3 times a day now instead of the previous 2 times

a day and maybe he's getting too much toothpaste? (Keto-friendly

Tom's of Maine spearmint). We have all had colds here at the house

the past week & a half, so the infection thing could very well be it.

>

> Of course this is super disappointing and I am in the weirdest of

states today, but I have to say I have never let my guard down with

him. Even though it had been almost 8 months seizure-free, I never

took that for granted. I feel so blessed that we had that long of a

reprieve!! I do have faith and believe that we can beat this again-

this was just a little attack, hiccup, whatever you may call it.

But, thank God we have already been through this and we know what to

do, know how to be strong, and know this is not the end of the world

(as I had previously thought the 1st time around!!). Next month will

be the 1 yr anniversary of his 1st seizure. Such odd timing!!

>

> I do appreciate all your prayers and support and any suggestions

you may have for me! I feel so safe and comforted that I have all of

you here to come to! I will keep you posted...

>

> Mom to Noah- age 3, med-free, & had his 1st seizure in 7 1/2

months today, on ketogenic diet

>

October 28, 2004

Ugh , good grief, what a nightmarish morning for you all that would

have been, I am so sorry, and yes, you must be feeling a bit 'out of it', I

would be too.

Have you checked his blood glucose and ketone levels, or did you this morning?

If illness is playing a part and upsetting the diet, it is usually because of

the glucose stress response to infection. Or it could have been from spiking a

very high temp, like a febrile convulsion that could have come whether he was an

epileptic or not.

I kinda doubt that changing using toothpaste from twice a day to three times

would be enough to trigger it, but if it was that, again - glucose and blood

ketone levels would prob tell you if that were the case? Or do you check urine

ketones only? If so, might be too hard to pinpoint whether ketones being

affected at the time played a part.

Sincerely hoping it was a blip only, has to be surely, after that length of

time being controlled.

Does your neuro know?

----- Original Message -----

From:

Hey all, this is one of the saddest posts I have ever had to write!!

This morning Noah had a grand mal seizure- completely out of left field for

us as he has been seizure-free for almost 8 months now- since March 5, 2004. His

last t/c was January 10, 2004. He has been on the ketogenic diet since March 2,

2004 and med-free since July, 2004. His last EEG was 1 month ago and it was

absolutely normal as a normal person could be.

Don't know really much right now- still in a fog here... I always have the

baby monitor in his room and this morning while we were all still sleeping at

6:45 AM I heard him " squeal " and if you have heard this before a seizure before,

then you know what I am talking about. I don't even remember making it up to his