Re: Hello! Starting July 19th~ne, starting the diet

[Guest guest]

Hello. My name is , from Valparaiso, Indiana and I am a stay at home

mom to Noah age 3 & age 2. Noah has Myclonic-astatic epilepsy or Doose

Syndrome. His seizures started as tonic/clonics once a week & after medications

were introduced he began having myoclonics, astatic, stares, drops, twitches-

these seizures would be as many as 200+ a day. He had to wear a helmet, etc. The

1st seizure began on Thanksgiving Day last year & we found an awesome pediatric

neuro in February (Dr. Laux at Children's Memorial in Chicago)- we started the

diet March 2 & Noah has been seizure free since March 5- over 4 months now. He

has responded AMAZINGLY to the diet. He was on Topamax before the diet (BAD for

us) when we were with our 1st (BAD) neuro and we weaned the Topamax ourselves

and took him to his current neuro- she prescribed Keppra and we are on our last

week & a half of that. He will then be med free.

I anticipated that the diet and everything was going to be much harder than it

really is. My biggest fears were about not being able to give him foods that he

loved, and how would we ever eat as a family again or go out to eat or handle

birthday parties for goodness sake??? Well, the 1st couple days you will need to

be very strong. Those are the days in the hospital when she won't be able to

have much at all and you'll look at it and be like- oh my goodness this isn't

food! What helps is to be POSITIVE about it all- don't let her see you cry or

want to cry or feel bad. Be happy that you have this opportunity! It lasts for

such a SHORT time! Before you know it, you will be dismissed and going home! A

lot of times they will be really sleepy from ketosis and will sleep a lot. The

nurses are in often to check, like every 4 hrs or so and will wake her up, but

hopefully she'll be able to sleep. Noah did, and those were the times I would

sneak out to get something to eat. Maybe you can

bring snacks with you to eat or hopefully the hospital has volunteers and

nurses that will sit with her while you run out to eat. I didn't eat in front of

Noah the whole time we were in the hospital. I always waited until he was alseep

and a couple days that meant I only ate twice and really late at night, but I

didn't care! When we left the hospital, they sent home a keto meal so we'd have

something for him and I went to the store right away with the menu plans the

dietician gave me & stocked up. I would make his meal at home & then we would

usually not eat in front of him the first day or so, but then we would eat with

him at the same time and eat whatever we were going to eat and he was fine- as

long as he had HIS food! Hopefully before long you will see that she won't mind

you eating other things and you'll be comfortable to eat in front of her. I just

say- this is mommy & daddy's food (My husband Jeff & I often eat different

things anyway!) or we say " this isn't Noah's special

diet. " He has gotten quite accustomed to it and feels proud when he recognizes

something that isn't his special diet and he'll proudly announce it to me. Our

best friends have a little boy Noah's age named Matt and Matt is also Noah's

best friend. Matt has Celiac disease and can't have wheat or gluten. He knows

exactly what he can or can't have and is the same way- he'll say that food will

make me sick, etc. (We don't teach our kids to say " sick " however, we just teach

Noah to say that's not on his special diet.)

For in the hospital, to keep Noah's mind off food (which was very hard), I

packed a HUGE bag of goodies that I had wrapped, and when needed, he got to pick

from the bag to open a new present. I ransacked the Dollar Store and got a bunch

of fun little things for him to play with, puzzles, stickers, games, etc. Some

tips I got were to have the glow in the dark stars and everytime she eats her

cream or gets blood drawn, etc, you give her a star to put on the wall. We were

able to have a tv/vcr in our hospital room and I let him watch as many videos as

he wanted! See if you can have them bring one in. That was nice since there was

already a tv in there, so I could watch that one while he watched his videos.

Anyway-! Just a few days after coming home from the diet initiation we had our

1st party to go to and I just prepared one of the keto recipes for a dessert-

the keto brownie (please add ALOT of sweetener to this one!!), I think. Noah

didn't end up liking it because it is with the Peppetti Better than Eggs egg

substitute so we don't make any of those eggy things now, but there are keto

candy bars you can make & right now his favorite " treat " or bedtime snack is the

buttered macadamia nuts or peanut butter crackers (wheat thins w/ butter, olive

oil, & Simply Jif peanut butter). Right now we have been on the diet over 4

months and I have to say I do not dread tomorrow and being in the kitchen

weighing his food, etc. I do not feel like it is a burden at all. I foresee that

this will be the way of life for at least the next year to come and that does

not make me sad at all. I hope you will see the bright side of it, too. I am

sure you will. It's hard to imagine anything right now until

you are plunged in all the way!

With the meals at the hospital, bring your liquid sweet & low or whatever sugar

substitute you were told to get & bring your pure flavorings & food colorings

(for the cream). If likes ice cream you can ask for the cream to be frozen

and then not on the hot plate when brought up. Unfortunately everytime they did

that with Noah it didn't make it to our room in time and was pretty much melted.

We had to add the sweetener anyway to it, so oh well! If she does like ice

cream, I do recommend doing that at home. That is the only way Noah would eat

his cream at first. Otherwise, get a good big oral syringe- gets it down fast! I

still sweeten, flavor, & color it when we syringe it, too. When the food comes

from the cafeteria, cut it up in little pieces so it looks like more. Same for

at home- I cut everything up in small portions, served in small bowls or on Zoo

Pals plates or fun party plates, whatever- to make it fun and seem like there is

more there than really is. It is true that

you won't know how to go about normal eating life around her in the first few

days. And, I understand that right now she doesn't understand if you tried to

prepare her for it. Noah was the same way. We still explained it even though we

were pretty sure he didn't know what we were talking about. And- you will see

that after the diet starts and the seizures stop, her development will TAKE OFF

and you won't believe your eyes. THEN you will be able to say, I am sorry honey,

but this is not on your special diet. You can have this instead, etc. I am not

sure if I repeat myself with some of this stuff, but one thing that helps tide

Noah over from meal to meal or as a " dessert " after his meals is the " free "

sugar free koolaid popsicles I make. I have popsicle molds and make the black

cherry or lemon-lime koolaid with the liquid sweet & low and pour it into the

molds. These are free and don't have to be calculated in the diet. I always have

the koolaid on hand anyway since that is how we

give him his medicine. Noah can have 1 nut (macadamia nut) as a special treat

and he looks forward to that. He has learned to love what he is allowed to have

and only will ask for that. His favorite meals are hardly what I thought he

would be able to eat -he can have hot dogs, watermelon, salad, chicken nuggets,

strawberries, steak, carrots, bacon... of course most of it is smothered in

butter and smaller amounts... but it is better than seizures. 100 %.

I am not sure if you already have one, but I recommend having a mini cooler or

one of those insulated lunch tote things that you can put a frozen ice pack in

to take food if you go out. When we go out to church or to someone's house I

will pack a meal or two for Noah just in case. I just don't want to be stuck

without his cream or if we decide to go out impromptu, we have his food with us.

We are looking at buying one of those refrigerator/freezers for the car. Often

if I am going to my mom's or in laws, I will bring all the stuff I need to make

his food there and then I can use their fridge or freezer. If we go to the mall

or somewhere without a kitchen, I bring it already prepared in the mini cooler

bag. If there is something to heat up, usually restaurants will microwave it for

you and will even bring it out on one of their plates if you want them to. Every

place we have been has been very accomodating and it is a great time to get the

word out about the diet! I don't know how

many times I have explained ourselves and then someone says- I know someone

with seizures, etc.

When working with the dietician with the scale & everything at the hospital, ask

all the questions you can think of- good or dumb or whatever! A lot of times I

would read what they gave me and write down all my questions and ask them as

soon as I saw her next time. It helps- and review the menu that they give you.

You can always recommend something that is her favorite food and they can work

it in for you. Or, you can look at part of the menu and say if she won't have

this or that, what can you use instead... etc. See if you can get your

dietician's email address & email her- that's what I do with our dietician and

it is great!! Also- our keto team had referred us to buy a really expensive

scale. Our insurance wouldn't pay for it, so I asked if we could just get a

cheaper one- got ours at Staples, an office supply store for $35.99. It has been

awesome- weighs to the gram, and I haven't had to replace it or the batteries

since we got it. Just something to think about, especially if

you ever need a replacement or back up scale!!

Please email me directly if you'd like, I am here to help! jsprecourt@....

The diet has been our miracle... I am so happy to help anyone- we have received

so much help from others as well.

Not long after starting the diet, we were driving in the car and I hear Noah say

excitedly " Hey, Mommy- THAT's not on my special diet!! " and he was pointing at a

Mc's. I had never outright said that he couldn't have Mc's, but he

knew. Our kids are so much stronger and capable than often given credit for. I

think he has had the easiest time with it all, for sure!!

I wish you the best!!

Mom to Noah, age 3 & seizure free on the keto diet

" Dina J. " raisehimup@...> wrote:

ne.

Welcome!

Youe story sounds very much like ours!

My 3 year old daughter, Sydney started Keto in March and is not seizure free,

but is 90% better! All of her oral motor dyspraxia, language disorders, sensory

integration and physical dysfunctions are 100% better!! She is only 1 wean away

from being drug free.

What part of the country are you in? We are in Cincinnati OH.

Help is near and better days are ahead!

You are in good hands here!

Keeping you in my prayers

Dina

Hello! Starting diet on July 19th

Hi Everyone,

We're so glad to discover this group! We are starting our 4 year old daughter,

, on the ketogenic diet on Monday, July 19th, and would appreciate any

information to help us along the way.

Our beautiful and healthy daughter, , had her first seizures in Dec. 2003

with 2 T/Cs within 1 week of each other. She was started on Tegretal but

switched to Depakote in March 2004 due to onset of myoclonic;atonic seizures (up

to a dozen/day). 24 hour VEEG confirmed dx of mixed generalized seizure

disorder (intractable)--capturing multiple clinical seizures and 40-50

subclinical seizures daily over a 3 day period. Since that time she has

experienced more T/Cs and most recently eyelid myoclonic seizures--with the time

between seizure activity diminishing in a rather rapid pattern (longest seizure

free period 20 days; now only 6 days). And I suspect daily subclinical seizures

(due to changes in her behavior and bluish coloration of her eyelids and a

recent EEG confirmed continuing spike wave patterns). While you'd never notice

with a casual glance, has also been diagnosed with mild hypotonia, oral

motor dyspraxia, a language disorder, and sensory integration

dysfunction and is currently in weekly OT and SLT and is showing improvement.

is on Depakote (1125mg/day), Keppra (125mg) and carnitine supplements.

She has moved beyond the therapeutic range with Depakote and is beginning to

experience more side affects--upset stomach, slight tremor (more like a

" jerkiness " ) when tired, and tends to sleep more (not necessarily a bad

thing-ha).

Because she is on such a high dose of Depakote a day, I have been closely

reading any posts regarding the interaction of Depakote and the diet. Any

suggestions with things to watch for while initiating the diet would be greatly

appreciated.

ne