 Getting
ready for the ketogenic diet (KGD)
Written by Stephanie,
Mom to Noah who developed MAE at the age of 2.8 years. Noah is
now 4, med-free, & seizure-free thanks to 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: I color
with food coloring (make it fun!), sweeten with liquid Sweet
& Low and pure flavorings. Right now his favorite is banana-
and I color it yellow and freeze so he eats it like banana
ice cream. I also use strawberry, vanilla, chocolate, etc.
You can ask your dietician which flavorings they recommend.
I order mine from Bickford Flavors online (www.bickfordflavors.com)-
they have a HUGE selection of flavors to choose from. He can
drink his cream through a straw, frozen like ice cream, or
with a large oral syringe (his choice!).
Lunch and dinner
Snack
- Macadamia nuts
with butter (he LOVES this)
- Peanut butter,
butter, & olive oil with wheat thins crackers
This 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, like Diet Rite.
 TIP:
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!
How does the Ketogenic Diet work?
What to
expect during hospital initiation
The first 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. 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.
Fun Stuff! 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!
 Going
Home
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.
For a time saver, I took the time to type up Noah’s favorite
meals on the computer, and then scaled to print onto 3X5 (or you
can do 4X6) size paper. I put it a clear acrylic picture frame
magnet for the fridge. I have them at easy access, but not
taking up much room at all. On one magnet I have meals and on
the other one I have his snacks and allowed fruits and
vegetables. It beats having to look it up in the book all the
time!
Preparation
BEFORE starting the diet
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
moulds 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.
Making the diet
work
-
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 according to the package
directions) 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.
-
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 John 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.
 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.
Important things
to understand
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 3-year-old son that
Noah eats with at every meal and he understands that Carter may
get to have things that Noah can't and he's ok with it! He says-
“that's Carter's food and this is Noah's food. “
Breakthrough
seizures
Noah was over 8 months seizure-free because of the Ketogenic
Diet. Last October he had a tonic-clonic 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 (now over 8 months since that last seizure), 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.
 Update
Noah is now completely medication-free, too. Fall 2004 he had
his 1st EEG since being seizure-free. 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! 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!!
Stephanie
Mom to Noah- age 4, med-free, & seizure-free on the ketogenic
diet¨
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