Re: Going to hosptial starting Keto-Viola

[Guest guest]

Hi, Viola. My son Noah has a similar rare-disorder like LG called Doose

Syndrome. The ketogenic diet is quite successful in controlling those type of

seizures. I am including tips that I used & send to others starting the diet-

hopefully it is helpful to you.

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 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??? 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. An example of Noah’s

favorite meals are as follows:

Breakfast:

Bacon with butter, strawberries 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), & 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. We won!!!

The 1st couple days 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 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 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!

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, 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. 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 it 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- didn't care as much about

playing with them!! But, they were fun to have- anything to get his mind off

food!! I also bought 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 4oz sizes with lids- great

for making the ice cream, snacks, or storing food in. 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) 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 and since it is “free” it doesn't

have to be calculated in the diet. 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. 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 what his/her

meals are just enough.

Noah is still not potty trained, so we 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” (Jeff & 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. 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) Anyway-!

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

providers, Sunday School teachers, and school teachers 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 read 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 is now over 6 months seizure-free to date because of the Ketogenic Diet. He

is completely medication-free now, too. You would never know by looking at him

that he has epilepsy and is on a special diet! Last week he had his 1st EEG

since being seizure-free and our doctor said it was not only GOOD, but it was

NORMAL!! Normal like someone that does not have epilepsy!! We have already

planned to start weaning the diet next summer and he should be off the diet

before starting school in the fall. 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

vihairaffair2000 vihairaffair2000@...> wrote:

We are going to the hosptial Monday 27th, to start the Keto, diet

with my son Caden.Any advice on going in iam really scared, hope my

son does well, the fasting has me worried.I pray alot that this will

help him ,these seizures have gotten so bad.Cade has Myoclonic, and

partial tonic, and has Lennox- Gastaut.Any good advice welcome.

Thanks Cades mom Viola.

" 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

team!

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