Re: starting diet again- KIM

[Guest guest]

Kim, I have a file in the files section on the Keto diet and I am just

including it here in my email, too. We are all here for you- keep asking away!

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

Starting the Ketogenic Diet…

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

harder than it really is. My biggest fears were about not being able to give my

son 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??? Think of it this way: is

depriving him of snacks and sweets really a bad thing? And, despite many

misconceptions, they can eat pretty well on the diet. Examples of Noah’s

favorite meals are as follows:

Breakfast:

Bacon with butter, strawberries, apple, or watermelon, & heavy cream that I

color with food coloring (make it fun!), sweeten with liquid Sweet & Low and

pure flavorings. Right now his favorite is chocolate. I also use strawberry,

vanilla, banana, cherry, etc. You can ask your dietician which flavorings they

recommend. I order mine from Bickford Flavors online- they have a HUGE selection

of flavors to choose from. He drinks his cream through a straw, frozen like ice

cream, or with an oral syringe (his choice!).

Lunch & Dinner:

Hot dog with butter, fruit, & heavy cream- made as explained above.

OR

Sirloin steak with butter, fruit, vegetables (right now he likes it with raw

carrot sticks or green peppers), & heavy cream.

OR

Tyson chicken breast tenders (chicken nuggets) with salad (lettuce with Ranch

dressing & olive oil), & heavy cream

OR

Angel hair pasta with a tomato cream sauce (tomato sauce, olive oil, butter,

Italian seasonings, parmesan cheese) and heavy cream.

Snack:

Macadamia nuts with butter (he LOVES this)

OR

Peanut butter, butter, & olive oil with wheat thins crackers

That is just an example of his favorite things to eat right now. There are many

more your dietician will plan out for you. You can customize the meals to what

your child likes best. Noah drinks only water, but most kids on the diet are

allowed to drink sugar-free Kool-Aid and approved diet sodas.

Try not to get down about what your child CAN’T have. If you are having a hard

time with it, think of all the benefits of the diet. This is not a life

sentence- someday your child will eat normal again… what matters more to you? Is

it more important for your child to be able to have a cookie or cake “just like

everyone else” right now, or be seizure-free? I picked the chance that Noah

could be seizure-free. The best choice we have ever made!

If you aren’t familiar with what the Ketogenic Diet really does to the body,

here is my short version- Your body normally burns glucose for energy. While on

the Ketogenic Diet, the body burns fat for energy. When the fat is burned,

ketones are produced in the brain. Ketones control seizures. In ancient times,

people would fast to rid themselves of seizures. The Ketogenic Diet mimics

fasting, while the body can still have food.

The 1st couple days starting the diet you will need to be very strong. These are

the days in the hospital when your child won't be able to have much to eat at

all (most initiations involve a 24 hour fasting) 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 your child see you 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!

Some children get very sick when starting the diet- that is why it is initiated

in the hospital. Noah had no complications at his diet initiation, so I am not

familiar with the steps taken to help when they can’t keep the food down. The

doctors & nurses are there to take care of it all for you, so again, be strong!

For the meals at the hospital, bring your liquid Sweet & Low or whatever sugar

substitute your dietician approves & bring your pure vanilla flavoring, approved

flavors, & food colorings (for the cream). 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, serve 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. In the hospital, I requested that Noah’s cream be frozen and

brought up on a separate plate since he likes ice cream. (If brought up with the

regular plate, it will probably melt before you get it!)

When working with the dietician with the scale & everything, 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. Review the menu plans that they give you while you

are in the hospital. You can always recommend something that is his/her favorite

food and they can work it in for you. Or, you can look at part of the menu and

say if you know he/she won't eat this or that, ask what you can substitute...

etc. See if you can get your dietician's email address & email him/her- that's

what I do with our dietician and it is great!! As for your scale, the dietician

will most likely give you instructions as to where you can purchase your scale.

It needs to weigh to the gram or to 1/10 gram. We bought ours at an office

supply store for $35. This was MUCH cheaper than the ones recommended by the

hospital ($200). Our dietician approved the one we bought

and it has worked great for us. I have had it over 5 months now and haven’t had

to change the batteries once yet, either. Again, check with your dietician for

approval.

It is very common for your child to be really sleepy from ketosis. They may

sleep a lot when you are in the hospital, and even when you get home. (Noah

started taking 2 naps again after we started the diet.) In the hospital, the

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

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

would sneak out to get something to eat. Our hospital had volunteers that would

sit with them while I ran out for a bit. I left him once while he was napping,

and he was still asleep when I came back. I also left him with a volunteer while

I worked with the dietician on making meals and working with the scale. Noah did

some arts & crafts during that time.

Ok, now don’t forget to have FUN during your hospital stay…before we went into

the hospital I went to the Dollar Store and bought a bunch of little toys,

puzzles, activities and wrapped them like presents. If he ate his meal or was

good during his check with the nurse, I would let him pick a prize. Sometimes I

would find that it just comes in handy to offer a present when he would ask for

food or want to leave! I believe that this is a situation where an exception can

be made to bribing them! Check the clearance section at toy stores & discount

stores, etc. He loved just opening the presents. They were fun to have- anything

to get his mind off food!! I also brought stickers and glow in the dark stars.

He could pick a sticker to put on the wall for a reward. That was a nice way to

get him excited about something other than food, too.

If available, I recommend doing any activities the hospital offers. Get out of

the room as much as possible! Noah had a 24hr EEG the 1st day, so we were in the

Epilepsy Monitoring Unit the 1st day, then we could roam free the rest of the

week there. He did have to be back every 4 hrs for a finger prick (blood glucose

test) and then to eat. The rest of the time we stayed busy. We would walk around

the hospital- go to the family activity center, even the lobby, etc. I took him

to the gift shop & let him pick out some balloons. You might want to bring some

videos he/she likes. They probably have videos at the hospital, but just in case

there is a favorite, it would be good to bring it. We had a TV/VCR brought in to

our room and that helped. Noah could watch his videos while I watched the TV in

the room. This helped pass some time!

When we came home from the hospital, the dietician had them send us home with a

to-go meal so we would have something already prepared for Noah’s next meal.

That helped so that I could go to the store and stock up on everything on his

meal plans.

For after the hospital: you will need cream, of course! (If you are using cream)

Heavy whipping cream at 36%- check the fat grams and our dietician says the 5g

or 6g fat is fine. (Of course- check with your own dietician!) It will help to

scout out your grocery stores ahead of time and know who carries the kind you’ll

need. The only ingredient should be heavy whipping cream. Nothing else.

I reviewed the meal plans we were given and picked some different meals to try

for Noah. I did a little at a time. I did find that he would like just 1 or 2 of

the same meals, and the first few weeks that was all he wanted. Over time he has

gotten more flexible and I try to have on hand the ingredients for all his

favorite meals so that he can have more of a variety.

Before the hospital I tried to stock up on the items I knew we’d be using when

we got home. I bought little storage containers in 4 oz sizes with lids- great

for making the ice cream, snacks, or for storing food. You can also save the

little cups they give you in the hospital and/or buy those at a wholesale place

like Gordon's or Sam's or a party store. They come in handy for weighing! Since

his meals are in such small amounts, it helps to serve them in little bowls or

plates. Some people buy the hand blenders to whip the cream. I haven’t tried

that yet. We do have the snow-cone maker to make his slushies, and the Popsicle

molds for his popsicles. I purchased an insulated bag/cooler for eating out at

restaurants and anytime you go out anywhere else. I find that even when we’re

just going out for a couple hours, I’ll take along a meal just in case. You

never know if you decide you want to go out for lunch on a whim or if an

emergency were to arise, I will at least have a meal with me.

I will usually have the meal already prepared and weighed out, but sometimes I

will bring extra food and the scale, just in case. Most restaurants are very

accommodating with special diets. I will tell them when we arrive that he is on

a special diet and before our food is served I have them microwave his food so

that he can eat when we do. Once we were at a restaurant without a microwave, so

they gave me a bowl of very hot water and I was able to heat his hot dog up in

that. (I set the container the hot dog was in into the water.) When we are going

someplace specific that we haven’t been before, I usually call ahead to check

their accommodations. We like to go to the zoo in Chicago and it is about an

hour away. I pack his meal and snack in the cooler and I also pack his popsicles

and wrap them in the ice packs in the cooler.

You will soon learn tricks of the trade when working with the diet. Noah was not

a “butter” guy at first, so we substituted mayo (our dietician says it is equal

to butter) and mixed it with a little oil & the salt substitute to make it a

salad dressing and put it on the " free food " lettuce. He loves that and the

lettuce keeps him from constipation (a common side effect from the diet.) Now he

is ok with the butter, but we still do the “salad” from time to time. It gives

him more to eat, too. Sugar free Kool-Aid popsicles are great. Keto friendly

Kool-aid flavors are black cherry and lemon-lime. (Made with water and liquid

Sweet & Low) I freeze this in Popsicle molds. I always had the Kool-Aid on hand

anyway since that is how we gave him his medicine. He also loves slushies or

shaved ice. We have a snow-cone machine (I think you can get them for under $20)

and I drizzle some of the Kool-Aid on top. He loves it! And, it’s just ice & a

little Kool-Aid! He has learned to love what he is

allowed to have and only will ask for that.

For holidays, birthday parties, and special occasions, I make sure I have a

special snack for Noah. If I know there will be ice cream, I make his cream

frozen ahead of time so he can eat ice cream with the rest of the kids. I’ll

bring his Popsicles usually, too. This is also a nice time to reward your child

with a small prize or something other than food that will make them feel like

they are not missing out on all the fun.

You will see that after the diet starts and the seizures decrease (and hopefully

stop altogether!), your child’s development will TAKE OFF and you won't believe

your eyes. THEN you will be able to say when they ask for food, “I am sorry

honey, but this is not on your special diet. You can have this instead, etc.”

The meals are SMALL. It looks like nothing at first- especially if your child

was already a good eater. But, the good thing about being in ketosis is that it

is a natural appetite suppressant. Eventually you will see that his/her meals

are just enough.

If your child is not potty trained, you will need cotton balls to put in his

diaper to measure ketones. The hospital will probably give you some Ketostix for

checking urine ketones and I also bought some over the counter from the

pharmacist (they may have them with glucose strips or by themselves as

Ketostix). Also, we crushed his medications and vitamins in a mortar & pestle-

it sure beats those silly pill crushers! We’d mix his crushed meds with a little

bit of the Kool-Aid mix and give it through a straw or oral syringe. Also you’ll

need all natural toothpaste- we get Tom's of Maine Natural toothpaste (available

at grocery stores and health food stores). Your dietician will probably give you

a list of things you’ll need as well.

Hopefully before long you will see that he/she won't mind you eating the

“forbidden foods” and you'll be comfortable to eat in front of him/her. I would

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

anyway!) or “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. 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) Anyway-!

It is important, though, that you do stress to any friends, caregivers, day care

providers, Sunday School teachers, and schoolteachers the extreme nature of the

diet and consequences when it is not followed. I explain it as if it is just

like a MAJOR food allergy. When people hear that it is a “diet” they may think

then it is ok to cheat a little and it won’t hurt them. I give the comparison of

giving sugar to a diabetic or a person with a severe nut allergy eating peanuts…

there is NO room for cheating!! It could send your child to the emergency room

or even worse- bring back seizures that are so hard to control!

Read The Ketogenic Diet by Freeman. I started mine before we went into the

hospital and planned to read it while we were there, but the time really flew

by- never picked it up. I finished it when we got home & have to say it made

more sense then since we were on the diet by then. It will help with the

technical terms that you will use when you find yourself explaining the diet to

everyone that asks. But, I don’t mind explaining it at all- the more educated

people are about the Ketogenic Diet, the better!

Main thing: This diet is NOT as hard as people and the doctors make it seem!

Maybe especially since I am on the other side now and Noah is doing well... it

is SOOOOO worth it! He loves the food- doesn't do anything I predicted he would.

I thought he would beg and cry and break my heart because he couldn't eat fast

food or his favorite snacks or candy anymore. He has not ONCE asked for any of

that. (Ok, maybe he did ask a little in the hospital, but I just kept explaining

that he had to eat what they brought him. After that, he figured it out, I

guess!) He asks for what he is allowed to have and is so good about eating it

all. I also have a 2-year-old son that Noah eats with at every meal and he

understands that may get to have things that Noah can't and he's ok with

it! He says- “that's 's food and this is Noah's food. “

Noah was over 8 months seizure-free to date because of the Ketogenic Diet. Just

recently he had a grand mal seizure “out of the blue”, but it turned out to be

from an ear infection. We cannot find any way that the diet could have been

compromised; the only good explanation is that it was from an infection. So far

it is considered an isolated incident, Noah is still seizure-free since then,

and this reminds us all that we must be very aware when our keto-kid has the

slightest of illnesses. You don’t want an infection creeping in. Make sure you

have a plan of action with your dietician and neurologist for “sick days”. Know

which keto-friendly medicines you may use and be sure to have them on hand. It

will be good to find a pharmacist that is informed of your child’s situation.

Noah is completely medication-free now, too. Recently he had his 1st EEG since

being seizure-free and the doctor said it was not only good, it was normal-

meaning normal like a normal person that does not have epilepsy!! You would

never know by looking at him that he has epilepsy and is on a special diet! Our

doctor is already planning to begin weaning the diet next summer if all

continues to go well. The length of time on the diet will vary by your doctor’s

recommendation and how well your child responds. We specifically prayed that not

only would this diet work for him, but that he would enjoy the food on the diet

& that it would be easy. Well, it has- prayers are answered! I will pray the

same for you!!

Love,

Mom to Noah- age 3, med-free, & seizure-free on the ketogenic diet

kim nkfranz@...> wrote:

hi to all

my six year old son is going to be starting the diet again in

january. when we were on it before we did not get much help from a

dietician because there were alot of staff changes going on. we did

see his drop attacks decrease so we are hoping for more help this

time around. we are going to start it at hopkins this time so i am

hoping for much more help. so i truly see myself starting with a

blank slate. i would love any imput from anyone of what i can do to

be ahead of the game for when we get started.

i have also heard of some great recipes like egg plant french fries.

if anyone has some good recipes that i can practice with before the

big day that would be great. that was one of the problems that we

had last time. i was not very creative and meals were very much the

same one after the other.

any help or advise would be greatly appreciated

thank you

kim

" 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

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[Guest guest]

,

My son has done well with the diet with the exception of cream

consumption. We just recently got him to suck it down quickly and

actually enjoy it by mixing the cream, oil, fruit2o and cherry Kool aid.

But I can't seem to find the lemon lime anywhere. Do you have any idea

if I can purchase it on line anywhere? Thanks!!!

(, 6.5 years old, has been a ketokid for 3 months now)

Re: starting diet again- KIM

Kim, I have a file in the files section on the Keto diet and I am just

including it here in my email, too. We are all here for you- keep asking

away!

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

Starting the Ketogenic Diet...

I anticipated that the diet and everything it entailed was going to be

much harder than it really is. My biggest fears were about not being

able to give my son 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??? Think of it this way: is depriving him of snacks and sweets

really a bad thing? And, despite many misconceptions, they can eat

pretty well on the diet. Examples of Noah's favorite meals are as

follows:

Breakfast:

Bacon with butter, strawberries, apple, or watermelon, & heavy cream

that I color with food coloring (make it fun!), sweeten with liquid

Sweet & Low and pure flavorings. Right now his favorite is chocolate. I

also use strawberry, vanilla, banana, cherry, etc. You can ask your

dietician which flavorings they recommend. I order mine from Bickford

Flavors online- they have a HUGE selection of flavors to choose from. He

drinks his cream through a straw, frozen like ice cream, or with an oral

syringe (his choice!).

Lunch & Dinner:

Hot dog with butter, fruit, & heavy cream- made as explained above.

OR

Sirloin steak with butter, fruit, vegetables (right now he likes it with

raw carrot sticks or green peppers), & heavy cream.

OR

Tyson chicken breast tenders (chicken nuggets) with salad (lettuce with

Ranch dressing & olive oil), & heavy cream

OR

Angel hair pasta with a tomato cream sauce (tomato sauce, olive oil,

butter, Italian seasonings, parmesan cheese) and heavy cream.

Snack:

Macadamia nuts with butter (he LOVES this)

OR

Peanut butter, butter, & olive oil with wheat thins crackers

That is just an example of his favorite things to eat right now. There

are many more your dietician will plan out for you. You can customize

the meals to what your child likes best. Noah drinks only water, but

most kids on the diet are allowed to drink sugar-free Kool-Aid and

approved diet sodas.

Try not to get down about what your child CAN'T have. If you are having

a hard time with it, think of all the benefits of the diet. This is not

a life sentence- someday your child will eat normal again... what

matters more to you? Is it more important for your child to be able to

have a cookie or cake " just like everyone else " right now, or be

seizure-free? I picked the chance that Noah could be seizure-free. The

best choice we have ever made!

If you aren't familiar with what the Ketogenic Diet really does to the

body, here is my short version- Your body normally burns glucose for

energy. While on the Ketogenic Diet, the body burns fat for energy. When

the fat is burned, ketones are produced in the brain. Ketones control

seizures. In ancient times, people would fast to rid themselves of

seizures. The Ketogenic Diet mimics fasting, while the body can still

have food.

The 1st couple days starting the diet you will need to be very strong.

These are the days in the hospital when your child won't be able to have

much to eat at all (most initiations involve a 24 hour fasting) 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 your child see you 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!

Some children get very sick when starting the diet- that is why it is

initiated in the hospital. Noah had no complications at his diet

initiation, so I am not familiar with the steps taken to help when they

can't keep the food down. The doctors & nurses are there to take care of

it all for you, so again, be strong!

For the meals at the hospital, bring your liquid Sweet & Low or whatever

sugar substitute your dietician approves & bring your pure vanilla

flavoring, approved flavors, & food colorings (for the cream). 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,

serve 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. In the hospital, I requested that Noah's cream be frozen and brought

up on a separate plate since he likes ice cream. (If brought up with the

regular plate, it will probably melt before you get it!)

When working with the dietician with the scale & everything, 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. Review the menu plans

that they give you while you are in the hospital. You can always

recommend something that is his/her favorite food and they can work it

in for you. Or, you can look at part of the menu and say if you know

he/she won't eat this or that, ask what you can substitute... etc. See

if you can get your dietician's email address & email him/her- that's

what I do with our dietician and it is great!! As for your scale, the

dietician will most likely give you instructions as to where you can

purchase your scale. It needs to weigh to the gram or to 1/10 gram. We

bought ours at an office supply store for $35. This was MUCH cheaper

than the ones recommended by the hospital ($200). Our dietician approved

the one we bought

and it has worked great for us. I have had it over 5 months now and

haven't had to change the batteries once yet, either. Again, check with

your dietician for approval.

It is very common for your child to be really sleepy from ketosis. They

may sleep a lot when you are in the hospital, and even when you get

home. (Noah started taking 2 naps again after we started the diet.) In

the hospital, the nurses are in often to check, like every 4 hrs or so

and will wake him/her up, but hopefully he/she'll be able to sleep. Noah

did, and those were the times I would sneak out to get something to eat.

Our hospital had volunteers that would sit with them while I ran out for

a bit. I left him once while he was napping, and he was still asleep

when I came back. I also left him with a volunteer while I worked with

the dietician on making meals and working with the scale. Noah did some

arts & crafts during that time.

Ok, now don't forget to have FUN during your hospital stay...before we

went into the hospital I went to the Dollar Store and bought a bunch of

little toys, puzzles, activities and wrapped them like presents. If he

ate his meal or was good during his check with the nurse, I would let

him pick a prize. Sometimes I would find that it just comes in handy to

offer a present when he would ask for food or want to leave! I believe

that this is a situation where an exception can be made to bribing them!

Check the clearance section at toy stores & discount stores, etc. He

loved just opening the presents. They were fun to have- anything to get

his mind off food!! I also brought stickers and glow in the dark stars.

He could pick a sticker to put on the wall for a reward. That was a nice

way to get him excited about something other than food, too.

If available, I recommend doing any activities the hospital offers. Get

out of the room as much as possible! Noah had a 24hr EEG the 1st day, so

we were in the Epilepsy Monitoring Unit the 1st day, then we could roam

free the rest of the week there. He did have to be back every 4 hrs for

a finger prick (blood glucose test) and then to eat. The rest of the

time we stayed busy. We would walk around the hospital- go to the family

activity center, even the lobby, etc. I took him to the gift shop & let

him pick out some balloons. You might want to bring some videos he/she

likes. They probably have videos at the hospital, but just in case there

is a favorite, it would be good to bring it. We had a TV/VCR brought in

to our room and that helped. Noah could watch his videos while I watched

the TV in the room. This helped pass some time!

When we came home from the hospital, the dietician had them send us home

with a to-go meal so we would have something already prepared for Noah's

next meal. That helped so that I could go to the store and stock up on

everything on his meal plans.

For after the hospital: you will need cream, of course! (If you are

using cream) Heavy whipping cream at 36%- check the fat grams and our

dietician says the 5g or 6g fat is fine. (Of course- check with your own

dietician!) It will help to scout out your grocery stores ahead of time

and know who carries the kind you'll need. The only ingredient should be

heavy whipping cream. Nothing else.

I reviewed the meal plans we were given and picked some different meals

to try for Noah. I did a little at a time. I did find that he would like

just 1 or 2 of the same meals, and the first few weeks that was all he

wanted. Over time he has gotten more flexible and I try to have on hand

the ingredients for all his favorite meals so that he can have more of a

variety.

Before the hospital I tried to stock up on the items I knew we'd be

using when we got home. I bought little storage containers in 4 oz sizes

with lids- great for making the ice cream, snacks, or for storing food.

You can also save the little cups they give you in the hospital and/or

buy those at a wholesale place like Gordon's or Sam's or a party store.

They come in handy for weighing! Since his meals are in such small

amounts, it helps to serve them in little bowls or plates. Some people

buy the hand blenders to whip the cream. I haven't tried that yet. We do

have the snow-cone maker to make his slushies, and the Popsicle molds

for his popsicles. I purchased an insulated bag/cooler for eating out at

restaurants and anytime you go out anywhere else. I find that even when

we're just going out for a couple hours, I'll take along a meal just in

case. You never know if you decide you want to go out for lunch on a

whim or if an emergency were to arise, I will at least have a meal with

me.

I will usually have the meal already prepared and weighed out, but

sometimes I will bring extra food and the scale, just in case. Most

restaurants are very accommodating with special diets. I will tell them

when we arrive that he is on a special diet and before our food is

served I have them microwave his food so that he can eat when we do.

Once we were at a restaurant without a microwave, so they gave me a bowl

of very hot water and I was able to heat his hot dog up in that. (I set

the container the hot dog was in into the water.) When we are going

someplace specific that we haven't been before, I usually call ahead to

check their accommodations. We like to go to the zoo in Chicago and it

is about an hour away. I pack his meal and snack in the cooler and I

also pack his popsicles and wrap them in the ice packs in the cooler.

You will soon learn tricks of the trade when working with the diet. Noah

was not a " butter " guy at first, so we substituted mayo (our dietician

says it is equal to butter) and mixed it with a little oil & the salt

substitute to make it a salad dressing and put it on the " free food "

lettuce. He loves that and the lettuce keeps him from constipation (a

common side effect from the diet.) Now he is ok with the butter, but we

still do the " salad " from time to time. It gives him more to eat, too.

Sugar free Kool-Aid popsicles are great. Keto friendly Kool-aid flavors

are black cherry and lemon-lime. (Made with water and liquid Sweet &

Low) I freeze this in Popsicle molds. I always had the Kool-Aid on hand

anyway since that is how we gave him his medicine. He also loves

slushies or shaved ice. We have a snow-cone machine (I think you can get

them for under $20) and I drizzle some of the Kool-Aid on top. He loves

it! And, it's just ice & a little Kool-Aid! He has learned to love what

he is

allowed to have and only will ask for that.

For holidays, birthday parties, and special occasions, I make sure I

have a special snack for Noah. If I know there will be ice cream, I make

his cream frozen ahead of time so he can eat ice cream with the rest of

the kids. I'll bring his Popsicles usually, too. This is also a nice

time to reward your child with a small prize or something other than

food that will make them feel like they are not missing out on all the

fun.

You will see that after the diet starts and the seizures decrease (and

hopefully stop altogether!), your child's development will TAKE OFF and

you won't believe your eyes. THEN you will be able to say when they ask

for food, " I am sorry honey, but this is not on your special diet. You

can have this instead, etc. " The meals are SMALL. It looks like nothing

at first- especially if your child was already a good eater. But, the

good thing about being in ketosis is that it is a natural appetite

suppressant. Eventually you will see that his/her meals are just enough.

If your child is not potty trained, you will need cotton balls to put in

his diaper to measure ketones. The hospital will probably give you some

Ketostix for checking urine ketones and I also bought some over the

counter from the pharmacist (they may have them with glucose strips or

by themselves as Ketostix). Also, we crushed his medications and

vitamins in a mortar & pestle- it sure beats those silly pill crushers!

We'd mix his crushed meds with a little bit of the Kool-Aid mix and give

it through a straw or oral syringe. Also you'll need all natural

toothpaste- we get Tom's of Maine Natural toothpaste (available at

grocery stores and health food stores). Your dietician will probably

give you a list of things you'll need as well.

Hopefully before long you will see that he/she won't mind you eating the

" forbidden foods " and you'll be comfortable to eat in front of him/her.

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

different things anyway!) or " 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. 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) Anyway-!

It is important, though, that you do stress to any friends, caregivers,

day care providers, Sunday School teachers, and schoolteachers the

extreme nature of the diet and consequences when it is not followed. I

explain it as if it is just like a MAJOR food allergy. When people hear

that it is a " diet " they may think then it is ok to cheat a little and

it won't hurt them. I give the comparison of giving sugar to a diabetic

or a person with a severe nut allergy eating peanuts... there is NO room

for cheating!! It could send your child to the emergency room or even

worse- bring back seizures that are so hard to control!

Read The Ketogenic Diet by Freeman. I started mine before we went

into the hospital and planned to read it while we were there, but the

time really flew by- never picked it up. I finished it when we got home

& have to say it made more sense then since we were on the diet by then.

It will help with the technical terms that you will use when you find

yourself explaining the diet to everyone that asks. But, I don't mind

explaining it at all- the more educated people are about the Ketogenic

Diet, the better!

Main thing: This diet is NOT as hard as people and the doctors make it

seem! Maybe especially since I am on the other side now and Noah is

doing well... it is SOOOOO worth it! He loves the food- doesn't do

anything I predicted he would. I thought he would beg and cry and break

my heart because he couldn't eat fast food or his favorite snacks or

candy anymore. He has not ONCE asked for any of that. (Ok, maybe he did

ask a little in the hospital, but I just kept explaining that he had to

eat what they brought him. After that, he figured it out, I guess!) He

asks for what he is allowed to have and is so good about eating it all.

I also have a 2-year-old son that Noah eats with at every meal and he

understands that may get to have things that Noah can't and he's

ok with it! He says- " that's 's food and this is Noah's food. "

Noah was over 8 months seizure-free to date because of the Ketogenic

Diet. Just recently he had a grand mal seizure " out of the blue " , but it

turned out to be from an ear infection. We cannot find any way that the

diet could have been compromised; the only good explanation is that it

was from an infection. So far it is considered an isolated incident,

Noah is still seizure-free since then, and this reminds us all that we

must be very aware when our keto-kid has the slightest of illnesses. You

don't want an infection creeping in. Make sure you have a plan of action

with your dietician and neurologist for " sick days " . Know which

keto-friendly medicines you may use and be sure to have them on hand. It

will be good to find a pharmacist that is informed of your child's

situation.

Noah is completely medication-free now, too. Recently he had his 1st EEG

since being seizure-free and the doctor said it was not only good, it

was normal- meaning normal like a normal person that does not have

epilepsy!! You would never know by looking at him that he has epilepsy

and is on a special diet! Our doctor is already planning to begin

weaning the diet next summer if all continues to go well. The length of

time on the diet will vary by your doctor's recommendation and how well

your child responds. We specifically prayed that not only would this

diet work for him, but that he would enjoy the food on the diet & that

it would be easy. Well, it has- prayers are answered! I will pray the

same for you!!

Love,

Mom to Noah- age 3, med-free, & seizure-free on the ketogenic diet

kim nkfranz@...> wrote:

hi to all

my six year old son is going to be starting the diet again in

january. when we were on it before we did not get much help from a

dietician because there were alot of staff changes going on. we did

see his drop attacks decrease so we are hoping for more help this

time around. we are going to start it at hopkins this time so i am

hoping for much more help. so i truly see myself starting with a

blank slate. i would love any imput from anyone of what i can do to

be ahead of the game for when we get started.

i have also heard of some great recipes like egg plant french fries.

if anyone has some good recipes that i can practice with before the

big day that would be great. that was one of the problems that we

had last time. i was not very creative and meals were very much the

same one after the other.

any help or advise would be greatly appreciated

thank you

kim

" 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

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