Re: MY SON JOSHUA

[Guest guest]

:

Welcome to our world. Jackie (age 7.5) fell off the monkey bars, broke

her arm, had all the tests done, and 6 weeks later (day after the cast came

off), the seizures started. We went through depakote, tegratol, zonegram,

lamitcal, kepra, and a couple of more drugs which I have since blanked out. We

ended up on the keto, and are slowly getting off of the dreaded meds. Jackie

has

had all types of seizures and some in between. She was diagnosed by " Dr.

Sue " six months before her own neuro admitted that she had DOOSE. She is

gradually getting off of the meds, and healing. She was very bright, gifted

before

all this journey happened. You are not alone-the lists are a great source of

information and just a shoulder to cry on.

mother of Jackie

age 7

kepra and depakote

still doing the dance!

[Guest guest]

Hi ,

Well yes, we have had a problem similar to this, actually, reading your

story, I would say almost IDENTICAL!!!

My son was 3 and a half when he too fell off a barstool hitting his

head requiring CAT scans, EEGs etc, as he had a Grand Mal that same night as

well.

However - in hindsight (and this is 3 yrs ago now that it happened) the

'fall' off the barstool, was actually one of his presenting seizures - a

probable drop attack. His too turned into a mixed seizure disorder within

the next 2 or so weeks, and he too was put on a med combination over the

next few months, including depakote, tegretol, dilantin and klonipin. The

only difference in our stories is, that we never tried the topomax...The

meds, again in hindsight - most definitely worsened 's seizures,

especially the tegretol and dilantin, and klonipin.

too was very active and advanced for his age, and believe me, I know

what you are going through - the sudden change in your life is just beyond

description with words. I had a 3 mth old baby at the time, and I kept

thinking I was going to somehow wake up from the nightmare. Obviously, I

didn't, and 3 yrs later, I still kinda keep hoping that one day I will...

However, I'm still here to tell our tale, so I guess I made it though ok

If CAT scans and MRIs show no actual damage from the fall causing the

resultant seizures, I think myself, that is unlikely the fall has brought

this on. A PET or SPECT scan may show a more in depth picture of any

potential scarring, small blockage etc that may be his seizure focal point,

but after a head truama, some form of bleeding will usually show on a CAT

scan very soon after the fall, if not immediately.

Has he been given an actual diagnosis for his 'seizure disorder'? Do the

EEGS show a definite focal point? Mixed seizure types are usually the most

difficult to control, and the med side effects from a cocktail that is

usually tried to stop all the various seizure types, can definitely alter

the situation - some that help grand mals may bring on drops, etc etc etc.

Therefore, a treatment such as the ketogenic diet is definitely one of the

best things to try, it will not usually aggravate the seizures as AEDs can,

and can have excellent results.

wasn't tried on it until 18 mths after his first seizure, my biggest

regret is not trying it sooner, I believe the earlier it is tried, the

higher the success rate, and the less chance of the meds wreaking their own

kind of havoc. I am not 'anti-meds', and if one or 2 AEDs had controlled

's seizures without bad side effects, I probably would actually have

taken that over the diet - but, they didn't. is very sensitive to

meds, and I honestly have to say that not one has made him any better

seizure wise, only worse.

's daytime seizures stopped within day 3-5 of diet initiation, but as

he was heavily medicated at the time of starting it, he went badly toxic a

couple of weeks later, which of course increased his seizures again. We have

had a long rocky road with his control on the diet since then, but on the

whole, he has had a 95% seizure reduction. He is still on meds, despite

trying to wean them down over the past 18 mths of him being on the diet. A

loooong story, illnesses, toxicity etc have meant many steps backwards, but

we are still fairly confident the diet IS his answer, and will be what cures

him, IF we can get the meds gone.

Are you confident that the team initiating 's diet are experienced and

knowledgable? This list will be an excellent resource for you, with many

ideas from all the parent s here to help you through any finetuning phase

that may be needed if he doesn't have immediate success. Sometimes we turn

into detectives more than parents when trying to figure this out - but it

can be so worth it in the end, as I am hoping you will shortly find.

Please feel free to fire any questions through, we will all be happy to

help,

Hill in NZ, mother to (now 6 yrs - keto diet since Sep 01)

> Our family lives changed forever on March 22, 2003. My youngest son

> was in the kitchen with his older twin brothers when he fell

> off of the barstool and hit his head on the hardwood floor. He

> immediately cried and when I got to him a scooped him up he passout

> for about 3 seconds then came to. He then passed out again for about

> 3 seconds again. My husband called 911 and we were taken to a local

> hospital and he had a catscan done. It came back normal. We were

> released at came home. About an hour after we came home he had a

> grand mal that lasted around 3 minutes. We were then transported to

> another hospital and stayed there overnight. He was put on

> Depakote. He then started to have more seizures. To make this long

> story a little shorter we have been on Depakote, Dilantin, tegretol -

> he in no longer on these. He is still on Topamax, Depakote and

> Klonopin. He has also had 2 Catscans, 1 MRI, 1-48 hour EEG, a number

> of blood draws. We decided to go to the best hospital in our area,

> University of Michigan. We have been in and out of the hospital for

> the past two months. He has had several grand mals, drops, focal and

> absence seizures. In the beginning his seizures were not that

> frequent, but now he is having up to 40 of the focal seizures a day.

> We are actually in the hospital now and we are trying the Ketogenic

> diet. was a advanced child before all of this happened and a

> very active 3 1/2 year old. He is still advanced and learning. He

> has no other disabilities. The doctors are having a hard time

> figuring out what to do next. Has anyone else had a problem similar

> to this? I would love to talk to you.

[Guest guest]

Hi ..... welcome to the group.

It sounds like they were not really able to tell you exactly why the fall caused

his seizures to start.... but obviously, they were initially provoked by the

accident. Many of us have kids who have experienced an increase in seizures,

regardless of what other diagnosis they have, that is actually CAUSED BY seizure

medications. This is common, believe it or not..... although most doctors won't

admit it. Their response is usually to add MORE drugs to the mix. We definitely

had this happen with Tegretol..... and if you read up on that drug in the PDR,

you'll see " increase in seizures " listed as a possible side effect! It's not the

only one..... just about any drug can cause this to happen. Another factor could

be that once their brain get really " good at " seizing, it tends to do more of

it...... you know what I mean?

I hope you'll see respond well to the Keto diet, but keep in mind that

med levels can easily go toxic on the diet, due to the way it changes the drug

metabolism. This is also something many Keto docs either won't admit, or aren't

aware of. Be watchful for symptoms of drug toxicity (especially with the Dep)

and tell your team that you are anxious to lower his med dosages as soon as

possible. After all, if the drugs were working, you wouldn't need the diet,

right? There's another thing to be aware of with Topomax. One of it's side

effects is an increased risk of kidney stones..... and that is a risk factor

with the Keto diet, too.... so the combo is not so good.

You should also be aware that many kids experience withdrawal seizures when the

drugs are taken away...... certain drugs cause this more than others. You may

find that you have to take drug weaning slowly, and ride out some rough spots.

Some kids don't get their best seizure control on the Keto diet until all the

drugs are gone, so just keep that in mind. I have not had to wean meds while my

child was on the diet, we were lucky enough to have a neuro that agreed with us

in weaning them all away prior to starting...... so some of the other parents

here can give you the support you need for that and share their experiences.

Starting the diet can be rough at first...... their little bodies need to get

used to all the fat and just being in ketosis. You didn't say how long ago the

diet was started but I'm assuming you're right at the beginning. Keep us posted

on how is doing and let us know if you have any questions or concerns.

Chances are, one of us has been there. Sounds like this has been a tough couple

of months for you..... there's been a lot to deal with in a short time. Hang in

there.

take care,

Patti, mom to Katera (age 6), Keto Kid for over 2 yrs (now off the diet).

MY SON JOSHUA

Our family lives changed forever on March 22, 2003. My youngest son

was in the kitchen with his older twin brothers when he fell

off of the barstool and hit his head on the hardwood floor. He

immediately cried and when I got to him a scooped him up he passout

for about 3 seconds then came to. He then passed out again for about

3 seconds again. My husband called 911 and we were taken to a local

hospital and he had a catscan done. It came back normal. We were

released at came home. About an hour after we came home he had a

grand mal that lasted around 3 minutes. We were then transported to

another hospital and stayed there overnight. He was put on

Depakote. He then started to have more seizures. To make this long

story a little shorter we have been on Depakote, Dilantin, tegretol -

he in no longer on these. He is still on Topamax, Depakote and

Klonopin. He has also had 2 Catscans, 1 MRI, 1-48 hour EEG, a number

of blood draws. We decided to go to the best hospital in our area,

University of Michigan. We have been in and out of the hospital for

the past two months. He has had several grand mals, drops, focal and

absence seizures. In the beginning his seizures were not that

frequent, but now he is having up to 40 of the focal seizures a day.

We are actually in the hospital now and we are trying the Ketogenic

diet. was a advanced child before all of this happened and a

very active 3 1/2 year old. He is still advanced and learning. He

has no other disabilities. The doctors are having a hard time

figuring out what to do next. Has anyone else had a problem similar

to this? I would love to talk to you.

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

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