RE: Thinking about ketogenic...

[Guest guest]

Hello and welcome. I think you will find lots of caring people on this

group who have tons of info on keto. I am relatively new (2 months into

keto) but have found this to be our " life raft " on this difficult journey.

My daughter is 18 months old and has been on the diet for 2 months with what

I consider to be incredible success. She has had seizures since she was 5

weeks old- no known cause and only 1 caught on EEG so they are not sure of

the exact type. They LOOK like tonic/clonic seizures although she recently

went through a spell of what looked like simple and complex partials. She

is now on a very tiny dose of lamictal, which she will be off of completely-

knock on wood- in 5 more weeks. We have had to tinker with the diet ratio,

etc and have had some withdrawal seizures as we have lowered the lamictal,

but her seizure control is far better than it ever was even on full doses of

two meds.

The diet is not easy. We have been to the emergency room twice b/c of

severe constipation and compaction- mainly b/c my daughter wouldn't DRINK

anything if it wasn't milk or juice. She finally got past that, with some

helpful tips from this group. We went through a few weeks of

super-crankiness and lethargy- lots of screaming and sleeping. I mean

SCREAMING. We went through a period where she would refuse to open her

mouth. We went through a period where she would open her mouth long enough

to get the food in and then spit it out. Through the help of people in this

group, she now gets meals that smell and look so yummy that I have to remind

my husband they are not his! The meals take a while to make every night and

the measurements are VERY precise (to the 10th of a gram), but it gets

quicker as you get used to it. The meals are very small. My daughter gets

870 calories a day, and that is more than the normal recommended amount for

her age. She was hungry for the first few weeks but has adjusted well and

now doesn't even seem to mind if we are running late with a meal. I wish I

had tried the diet a year ago. I really do. It is worth every second. It

is worth every measurement, every battle over food, every headache from the

screaming, to see my child coming out of this medicine fog and stop having

these damn seizures. She is now having one every few weeks and, although we

are hoping to tinker with things and get rid of even those, I am pretty darn

happy with those numbers. It took a real commitment and a lot of support

from the people in this group to not throw in the towel when things were

rough but I am so glad we stuck with it. I'm sure there will be more rough

times, but for now Langan is sleeping better, she's happier, she's more

interactive and she's developing better than I imagined was possible- and I

think the diet is absolutely the reason!

Sorry to ramble. You can tell I am a big fan of this thing! Good luck!

I hope you give keto a try!

, mom to Langan, 18 months old and keto kid since 11/03.

>

>Reply-To: ketogenic

>To: ketogenic

>Subject: Thinking about ketogenic...

>Date: Tue, 27 Jan 2004 09:36:46 -0800 (PST)

>

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[Guest guest]

I am very happy to share our success story on the diet. I am on sort

of a " high " right now because we just returned from a follow-up visit

and the new just gets better and better. You might have to take my

enthusiasm with a grain of salt.

My daughter's diagnosis story is very similar to yours, but she was 6

yrs. old. She started with TC seizures, but developed the same types

as your son within a few months. She also had the dreaded atonic

or " drop to the ground right now no warning " seizures. Hated those

the most. I believe that some of them were medication induced, now.

We tried all the drugs you've tried except klonapin, because I

refused to use benzos. Luckily, I had prior knowledge of how they

work, so we didn't have to go through the nightmare that many have

had. I suppose they do work for some, but in my mind, it was a risk

not worth taking. We did use Felbatol, added to Depakote already on

board. I was concerned about its safety, too, but recently I have

read that no new cases of aplastic anemia have been diagnosed in very

recent years. Most seemed to be when it first came onto the

market. Weird. When we finally agreed to try it, we had already

been referred for a keto evaluation and interview. I have to say

that it stopped the atonic seizures... thank God. The rest were much

decreased, but the side effects of both drugs were so bad.

Bill posted the best ways to educate yourself about the diet. Also,

hang out here for a while just reading posts and asking questions

when they come up. If you decide to try it... find a really good keto

team. I have been surprised to learn that some are not so

knowledgable. If you post your location, there is likely to be

someone here who can share their area with you.

We are approaching 6 months on the diet. My daughter has been

seizure free from the beginning and were med free at 3 weeks. We

stopped Depakote during initiation. She had a completely clear EEG

at 8 weeks on the diet. We literally got our daughter back. She was

struggling in school, a zombie, lost about half of her hair, and I

could go on. This year she has had 2 straight A report cards, is

back doing all of her former activities that she had to stop because

of the seizures or the fact that she was too drugged. She has been

very compliant on the diet until just recently when she's confessed a

few minor " cheats " . They haven't made a difference. Yesterday when

we met with the team we came up with a plan to slowly get her onto

the Atkins diet by June (less than one year on keto). Oh, she also

had a second clear EEG two weeks ago! Her EEGs previously were

awful.

Obviously, the diet is our miracle. I believe that a LOT of prayers

from us and all of our family and friends have helped us along. We

figured that we had nothing to lose by trying the diet and maybe lots

to gain... oh, yeah! The diet is not easy. It is very strict and

very precise. Sometimes, your life revolves around it. We weigh all

our foods to the nearest gram. Some weigh to tenths of a gram. You

have to learn a whole new language (well, almost) But, in time, you

learn to manage, and you gain confidence. There are some good

threads a few months back about starting the diet... Sept. or Oct.?

There is also a good one on the efa e-communities parents helping

parents website called " thinking of keto...your thoughts? " as well as

a couple of others.

I certainly encourage you to learn all that you can about the diet.

I understand your feeling about the physicians. Our neuro was happy

to refer us, but didn't give us a lot of hope. Guess what? One more

has seen the possibilities.

Welcome to the group! I hope we can be helpful to you in your

decision to try the diet.

Cammie

> Hello all, its good to find groups like this.

>

> My son is almost 4 years old. A year ago he was diagnosed with

epilepsy. It started with " head drops " and now consists of tonic.

myoclonis, and absence seizures. He has sometimes hundreds a day.

The best control we get is with too much depakote and a some kepra,

but he still has around 30 or 40 a day. Hes tried klonapin, depakote,

topamax, and kepra, and none work very well at all. Our doctor wants

to try felbatol and I have found hat that is not the sfest of drugs,

a little scary even. Our search for better neurologists, drugs that

work, caring professionals and a cause for the epilepsy, have all

come up empty.

>

> Getting to the point...I have been considering trying the ketogenic

diet as a treatment. I was hoping to know from anyone some real life

exapmles of the diet and its results. what kind of success are

people having with these seizure types? whats a tyical days food

intake? is energy or personality changed? how exact and precixe is

everything? any and all info will be wonderful...im tired of getting

all of myinfo from doctors who dont listen to me.

[Guest guest]

I am very happy to share our success story on the diet. I am on sort

of a " high " right now because we just returned from a follow-up visit

and the new just gets better and better. You might have to take my

enthusiasm with a grain of salt.

My daughter's diagnosis story is very similar to yours, but she was 6

yrs. old. She started with TC seizures, but developed the same types

as your son within a few months. She also had the dreaded atonic

or " drop to the ground right now no warning " seizures. Hated those

the most. I believe that some of them were medication induced, now.

We tried all the drugs you've tried except klonapin, because I

refused to use benzos. Luckily, I had prior knowledge of how they

work, so we didn't have to go through the nightmare that many have

had. I suppose they do work for some, but in my mind, it was a risk

not worth taking. We did use Felbatol, added to Depakote already on

board. I was concerned about its safety, too, but recently I have

read that no new cases of aplastic anemia have been diagnosed in very

recent years. Most seemed to be when it first came onto the

market. Weird. When we finally agreed to try it, we had already

been referred for a keto evaluation and interview. I have to say

that it stopped the atonic seizures... thank God. The rest were much

decreased, but the side effects of both drugs were so bad.

Bill posted the best ways to educate yourself about the diet. Also,

hang out here for a while just reading posts and asking questions

when they come up. If you decide to try it... find a really good keto

team. I have been surprised to learn that some are not so

knowledgable. If you post your location, there is likely to be

someone here who can share their area with you.

We are approaching 6 months on the diet. My daughter has been

seizure free from the beginning and were med free at 3 weeks. We

stopped Depakote during initiation. She had a completely clear EEG

at 8 weeks on the diet. We literally got our daughter back. She was

struggling in school, a zombie, lost about half of her hair, and I

could go on. This year she has had 2 straight A report cards, is

back doing all of her former activities that she had to stop because

of the seizures or the fact that she was too drugged. She has been

very compliant on the diet until just recently when she's confessed a

few minor " cheats " . They haven't made a difference. Yesterday when

we met with the team we came up with a plan to slowly get her onto

the Atkins diet by June (less than one year on keto). Oh, she also

had a second clear EEG two weeks ago! Her EEGs previously were

awful.

Obviously, the diet is our miracle. I believe that a LOT of prayers

from us and all of our family and friends have helped us along. We

figured that we had nothing to lose by trying the diet and maybe lots

to gain... oh, yeah! The diet is not easy. It is very strict and

very precise. Sometimes, your life revolves around it. We weigh all

our foods to the nearest gram. Some weigh to tenths of a gram. You

have to learn a whole new language (well, almost) But, in time, you

learn to manage, and you gain confidence. There are some good

threads a few months back about starting the diet... Sept. or Oct.?

There is also a good one on the efa e-communities parents helping

parents website called " thinking of keto...your thoughts? " as well as

a couple of others.

I certainly encourage you to learn all that you can about the diet.

I understand your feeling about the physicians. Our neuro was happy

to refer us, but didn't give us a lot of hope. Guess what? One more

has seen the possibilities.

Welcome to the group! I hope we can be helpful to you in your

decision to try the diet.

Cammie

> Hello all, its good to find groups like this.

>

> My son is almost 4 years old. A year ago he was diagnosed with

epilepsy. It started with " head drops " and now consists of tonic.

myoclonis, and absence seizures. He has sometimes hundreds a day.

The best control we get is with too much depakote and a some kepra,

but he still has around 30 or 40 a day. Hes tried klonapin, depakote,

topamax, and kepra, and none work very well at all. Our doctor wants

to try felbatol and I have found hat that is not the sfest of drugs,

a little scary even. Our search for better neurologists, drugs that

work, caring professionals and a cause for the epilepsy, have all

come up empty.

>

> Getting to the point...I have been considering trying the ketogenic

diet as a treatment. I was hoping to know from anyone some real life

exapmles of the diet and its results. what kind of success are

people having with these seizure types? whats a tyical days food

intake? is energy or personality changed? how exact and precixe is

everything? any and all info will be wonderful...im tired of getting

all of myinfo from doctors who dont listen to me.

[Guest guest]

I am very happy to share our success story on the diet. I am on sort

of a " high " right now because we just returned from a follow-up visit

and the new just gets better and better. You might have to take my

enthusiasm with a grain of salt.

My daughter's diagnosis story is very similar to yours, but she was 6

yrs. old. She started with TC seizures, but developed the same types

as your son within a few months. She also had the dreaded atonic

or " drop to the ground right now no warning " seizures. Hated those

the most. I believe that some of them were medication induced, now.

We tried all the drugs you've tried except klonapin, because I

refused to use benzos. Luckily, I had prior knowledge of how they

work, so we didn't have to go through the nightmare that many have

had. I suppose they do work for some, but in my mind, it was a risk

not worth taking. We did use Felbatol, added to Depakote already on

board. I was concerned about its safety, too, but recently I have

read that no new cases of aplastic anemia have been diagnosed in very

recent years. Most seemed to be when it first came onto the

market. Weird. When we finally agreed to try it, we had already

been referred for a keto evaluation and interview. I have to say

that it stopped the atonic seizures... thank God. The rest were much

decreased, but the side effects of both drugs were so bad.

Bill posted the best ways to educate yourself about the diet. Also,

hang out here for a while just reading posts and asking questions

when they come up. If you decide to try it... find a really good keto

team. I have been surprised to learn that some are not so

knowledgable. If you post your location, there is likely to be

someone here who can share their area with you.

We are approaching 6 months on the diet. My daughter has been

seizure free from the beginning and were med free at 3 weeks. We

stopped Depakote during initiation. She had a completely clear EEG

at 8 weeks on the diet. We literally got our daughter back. She was

struggling in school, a zombie, lost about half of her hair, and I

could go on. This year she has had 2 straight A report cards, is

back doing all of her former activities that she had to stop because

of the seizures or the fact that she was too drugged. She has been

very compliant on the diet until just recently when she's confessed a

few minor " cheats " . They haven't made a difference. Yesterday when

we met with the team we came up with a plan to slowly get her onto

the Atkins diet by June (less than one year on keto). Oh, she also

had a second clear EEG two weeks ago! Her EEGs previously were

awful.

Obviously, the diet is our miracle. I believe that a LOT of prayers

from us and all of our family and friends have helped us along. We

figured that we had nothing to lose by trying the diet and maybe lots

to gain... oh, yeah! The diet is not easy. It is very strict and

very precise. Sometimes, your life revolves around it. We weigh all

our foods to the nearest gram. Some weigh to tenths of a gram. You

have to learn a whole new language (well, almost) But, in time, you

learn to manage, and you gain confidence. There are some good

threads a few months back about starting the diet... Sept. or Oct.?

There is also a good one on the efa e-communities parents helping

parents website called " thinking of keto...your thoughts? " as well as

a couple of others.

I certainly encourage you to learn all that you can about the diet.

I understand your feeling about the physicians. Our neuro was happy

to refer us, but didn't give us a lot of hope. Guess what? One more

has seen the possibilities.

Welcome to the group! I hope we can be helpful to you in your

decision to try the diet.

Cammie

> Hello all, its good to find groups like this.

>

> My son is almost 4 years old. A year ago he was diagnosed with

epilepsy. It started with " head drops " and now consists of tonic.

myoclonis, and absence seizures. He has sometimes hundreds a day.

The best control we get is with too much depakote and a some kepra,

but he still has around 30 or 40 a day. Hes tried klonapin, depakote,

topamax, and kepra, and none work very well at all. Our doctor wants

to try felbatol and I have found hat that is not the sfest of drugs,

a little scary even. Our search for better neurologists, drugs that

work, caring professionals and a cause for the epilepsy, have all

come up empty.

>

> Getting to the point...I have been considering trying the ketogenic

diet as a treatment. I was hoping to know from anyone some real life

exapmles of the diet and its results. what kind of success are

people having with these seizure types? whats a tyical days food

intake? is energy or personality changed? how exact and precixe is

everything? any and all info will be wonderful...im tired of getting

all of myinfo from doctors who dont listen to me.