RE: Not sure what to think

[Guest guest]

Dear Amy,

My son went on the diet after only having 5 weeks of seizures, and had been

on only one medication, which actually worked for him. My greatest concern

at the time was, " how am I going to get this kid to outgrow this with the

greatest odds " . My neurologist suggested the diet right away. After getting

on the diet, I was often very angry at my neurologist for doing the diet so

early and not warning us how painfully hard the diet was to implement. I

almost vomited when the dietitian brought up his first meal after he starved

for 3 days and saw how little he actually would get. We went through a

terrible first 3 weeks with vomiting, lethargy and begging for more food. I

thought I would have a nervous breakdown! We started Lamicatal 3 days before

we started the diet as well.

That was last June. We have had 3, 24 hr EEG's which have since the start of

the diet (actually since we decreased the ratio to 3.5:1) come back " clean as

a whistle " per our neuros report. We have been able to successfully wean him

from the diet and have rechecked his EEG, which is still remaining " normal " !

The dr. feels that 10 months on the diet has cured our little guy because we

started it so soon.

This diet is grueling! There is no doubt about it! But my little sweetie is

so happy and developing so well, I don't regret it at all. But be ready for

some rocky times ahead! As much as I thought my son was suffering, now that

he can have all the favorite foods he used to have, he prefers his keto

favorites at the present time! 'These kids are resilient and I think it is

harder on us that it is on them a lot of the time!

My advise to you is go with your instinct and be ready for the decissions you

make. If you decide the diet is not for you, you will have to wean off it as

if it were a drug, and so you just can't quit when you want. That fact, no

one ever told me!

Good luck with Hunter! XOX-Tina, mom to Ethie,3 1/2yrs

[Guest guest]

Amy

I am not an expert.

I just really believe any doctor who uses quantity as a measure is out of

their mind. I am sure if you jave 10 a month that should not be okay even if

it is better than some of the rest of us. We all want ZERO a month and that

is OKAY!!!!TRY it and see!!!!You will only know if you try. Any child having

less and less and even No seizures is better than one having them!!!GO FOR

IT!!!INSIST!!!

Good LUck

Eilleen

Mom to (keto kid since 2/02 not seizure free but so much more ALIVE

coming off meds!!!!).

[Guest guest]

DAN

GOD BLESS YOUR YOU FOR YOUR PERSEVERENCE AND ATTITUDE!! YOU HAVE LUCKY

CHILDREN!!!

[Guest guest]

on 05/09/2002 5:50 PM, Amy Solberg at solberg@... wrote:

Amy, My daughter is a patient of Dr. B " s and I don't think you have

to worry about the criteria from Freemans book. When was first

initiated we were at another hospital that closely followed Freemans book

however Mayo does things differantly and I wish we would have gone this way

first. No fasting, usually no hospital stay, wean onto the diet etc.

Eckert was our dietician and I really like her. has been on the diet

since 11/96 after multiple admissions for seizures. She had her FIRST normal

EEG 7/99. The next EEg we had was 3/02 and was again normal. Seizure free

and med free! Robbie mom to soon to be 15 (5/19)

ketogirl

> I have been on here for 4 days now and I have learned so much and have gotten

> so excited about starting the diet. It took me 3 months to just come to terms

> with even looking into the diet. I had talked to 2 mom's on an epilepsy board

> and they both had tried the diet and their children both became seizure free.

> But after a year or so both mom's quit. They told me it was just to hard.

> Hard on the children and the parents. I just could not understand that. I

> thought boy it must be hard if their kids were seizure and drug free but they

> opted to go back on the drugs. That made me think that it was not even worth

> it to try if it's that hard. Then finally last week, after more seizures,

> tons of prayer and lots of drugs I felt I would do anything to help my son.

> So that's when I opened the tape I had for 2 months, from the Charlie

> foundation. I sat and cried through the whole thing. I thought, I just

> wish I would have done this sooner. After the tape was done I looked at the

> list of drs. that specialize in this across the country and neuros at Mayo

> clinic just 7 hrs from us do. Hunter, thank goodness, has already been there

> so it wasn't hard to get an appointment. We go July 1st. So then I started to

> look up some things and found this board. I have been reading all your posts

> and most having good luck with the diet. I started to think I can do this. I

> have my husband so excited as I tell him all of your success stories. Then

> today as I was doing some research on the web I found this quote from Dr.

> Freeman.

>

> Of all the children who have a single seizure, 70 percent never have another

> one and don't require any treatment for it, " he says. " Of those who have two

> or more seizures, 70 percent will be able to bring their condition under good

> control with the first medication they try. Only about 20 percent of children

> with epilepsy have a condition that won't respond to any medication. " Dr.

> Freeman suggests that parents consider the anti-epilepsy diet, known as the

> ketogenic diet, for a child who has frequent seizures and has already tried

> two or more medications without success.

>

> If that's the case, and drs. wont start you on this unless you fit the

> criteria then Hunter doesn't fit. Hunter has seizures maybe 2or 3 a week.

> Far less than most of you and far less than what he calls severe cases. I

> don't understand. I want him drug free that is my goal. If he has the same

> amount of seizures on the diet without meds. that to me is worth it to do this

> than to have him have all the side effects he has with his tegretol. So now I

> am thinking when we get to the mayo and they look at his records showing maybe

> 10 seizures in a month. He will look at me and say what are you complaining

> about, he is doing great on his drugs. What counts as frequent? Also Hunter

> has only tried one medication. I don't want to try another one I want to have

> him off these poisons. If any of you have any info on that I would greatly

> appreciate it. Thanks, Amy

>

>

>

[Guest guest]

Amy,

Our daughter, , would have four or five seizures a month while she was

on drugs. We felt that anything less than 100% seizure free was

unacceptable. We tried five medications, but if we were to do this all over

again we would have tried the diet first. Since the first seizure my wife

and I have taken the attitude that the seizures were the enemy, that this is

a war and we may lose lots of battles but we will never lose the war.

If anybody were to tell us that we should be happy with loading up our child

on drugs and that some seizures were acceptable then maybe they should watch

her for a day or two and give her 23 pills a day with the last dose waking

her up at 10:30pm. How would they like the stress of having to watch her

like a hawk to see if we have to scoop her up and run to the hospital

because she was status. I have also asked people what would you do if this

was you or one of your children? Another contributing factor was that the

school district said because of her delays she may not do well in a normal

classroom and would have be put in " self contained classroom " .

As of today we have weaned all of her drugs, had a few withdrawal seizures,

made some mistakes in her meals that resulted in a few seizures, and learned

a lot from this list. This morning we had 's IEP for next year's

school year and all of her therapists commented on how much progress she has

made since the beginning of the school year. Her development without the

drugs has been astounding to say the least. There was even talk (knock on

wood) that could attend kindergarten when the time comes. That hope

is something I don't think we even would have had with the 23 pills a day

that we were giving .

Just remember that you are the parents of your child and that it is up to

you to do what is best for your child, not what is in the doctor's interest.

There are lots of doctors out there, you can always find one that will agree

with you. I feel some doctor's knowledge are like horse blinders to them,

they won't look at what is outside of their knowledge.

Dan Currier, father to , 4, seizure free med free, keto kid since

8/01.

Not sure what to think

I have been on here for 4 days now and I have learned so much and have

gotten so excited about starting the diet. It took me 3 months to just come

to terms with even looking into the diet. I had talked to 2 mom's on an

epilepsy board and they both had tried the diet and their children both

became seizure free. But after a year or so both mom's quit. They told me

it was just to hard. Hard on the children and the parents. I just could

not understand that. I thought boy it must be hard if their kids were

seizure and drug free but they opted to go back on the drugs. That made me

think that it was not even worth it to try if it's that hard. Then finally

last week, after more seizures, tons of prayer and lots of drugs I felt I

would do anything to help my son. So that's when I opened the tape I had

for 2 months, from the Charlie foundation. I sat and cried through the

whole thing. I thought, I just wish I would have done this sooner. After

the tape was done I looked at the list of drs. that speci

Of all the children who have a single seizure, 70 percent never have another

one and don't require any treatment for it, " he says. " Of those who have two

or more seizures, 70 percent will be able to bring their condition under

good control with the first medication they try. Only about 20 percent of

children with epilepsy have a condition that won't respond to any

medication. " Dr. Freeman suggests that parents consider the anti-epilepsy

diet, known as the ketogenic diet, for a child who has frequent seizures and

has already tried two or more medications without success.

If that's the case, and drs. wont start you on this unless you fit the

criteria then Hunter doesn't fit. Hunter has seizures maybe 2or 3 a week.

Far less than most of you and far less than what he calls severe cases. I

don't understand. I want him drug free that is my goal. If he has the same

amount of seizures on the diet without meds. that to me is worth it to do

this than to have him have all the side effects he has with his tegretol.

So now I am thinking when we get to the mayo and they look at his records

showing maybe 10 seizures in a month. He will look at me and say what are

you complaining about, he is doing great on his drugs. What counts as

frequent? Also Hunter has only tried one medication. I don't want to try

another one I want to have him off these poisons. If any of you have any

info on that I would greatly appreciate it. Thanks, Amy

[Guest guest]

Amy -- If you want to go the diet-route and you feel

it's the right thing to do. . . don't let anything

stand in your way. We did initiate with " permission "

from our neuro -- but he hasn't laid eyes on in

nearly two years and I only call the dietician when I

have a question that I'm just not sure on. There are

a few lucky, brave families on this list who went on

the diet after trying only one drug. If the drug side

effects aren't acceptable then they just plain aren't

-- as they aren't for us. . .my daughter has

behavioral problems thanks to Tegretol, liver problems

thanks to Depakote, lost speech thanks to Topomax and

sleep seizures thanks to Lamictal. Pumping chemicals

into children isn't right -- it's just that we've been

conditioned to always believe what we're told from the

docs. Our doc said that none of the four previously

mentioned drugs had side effects. He said the diet

was too difficult. Wrong on both counts! Just go up

there to the Mayo Clinic and tell them that you're

there to put your son on the diet. . .don't ask them.

.. . tell them. Hope I don't sound too harsh, it's

just that too often medical professionals forget that

these are our children -- not theirs! Good luck as

you continue to look into this. . .and put that darned

quote out of your mind!!!-D

__________________________________________________

[Guest guest]

Hard for me to believe that anyone would quit the diet after a year if it was

working. And why would they even have started the diet in the first place if

meds were working? So, how could you quit something that DID work to go back to

something that didn't? I don't know.... I do think the diet is a lot of work

but nothing compared to the hell of watching what my daughter suffered with

seizure meds.

Patti, mom to Katera

[Guest guest]

Amy,

Our daughter Shan, age 7, was having a day of seizures about every 10-14

days while on Tegretol and Topamax. She did not fit Dr. Freeman's

criteria. We reached our limit on these two drugs, and instead of

going on to try lamictal (tried trileptal, Depakote, Klonipin) we said

we wanted to try the diet. Her quality of life had taken a dive for the

worse, no longer could function in the kindergarten class room. Since

starting the diet 3 months ago we have been able to wean her off most of

her medications (100mg left to go on Tegretol) and she could now easily

be a part of a school classroom and blend in (not be impulsive and pinch

other kids, stay on task and learn, be calm). The ability to once again

be able to function positively in society and our family is in itself

worth the diet, but as well the cycle of seizures has been broken. She

no longer has day time seizures except occasional seizures in her

abdominal area (can live with that). She does have a couple night time

seizures that we noticed a couple weeks ago which I have no idea when

they started (always been there?.because of drug wean?. because of high

ketones?....because of Depakote when we first ever noticed a night

seizure with her?....who knows). Looking back, I wish we had started

the diet right when 10 months ago her controlled epilepsy (6 years)

suddenly was no longer controlled on Tegretol. This is what

neurologists should be doing. Try a drug and if it doesn't work or it

takes away quality of life then go to the diet. And, don't start a

child on drugs just because he/she had only 1 seizure and the EEG is

abnormal. Better yet, the child who has had a seizure and abnormal EEG

start him/her on the Atkins diet immediately and recheck several months

later. Give the child a chance to heal and a chance to continue to

develop!

When you go to the Mayo clinic, go with the idea of " no more harm " to my

son. Don't ask them if he is a good candidate. Ask them when Hunter

can begin. You are cutting out of Hunter's life months and months of

drug trials, side effects, developmental suppression/regression and

wishing that you had started the diet at this time, not to mention

having to wean Hunter off of the tried drugs to get the best results

from the diet. Go for it!

Rhonda

Philippines

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