Re: hannah's a keto kid!!!

[Guest guest]

Congratulations Hannah!!

Did you download the Stanford Meal Planner on the Keto site??

Some have purchased other mealplanners

These meal planners enable you you make the recipes into your childs ratio

The foods are on the planner and you can add foods that are not on it

Otherwise " doing it by hand " is very tedious and mistakes happen more readily

I started off with hand calculations--took too much time--time that was

already precious to me

And much more difficult

I purchased the program because I did not know about the Stanford meal planner

Check it out

It will be your life saver

Sandi

[Guest guest]

Way to go - never mess with a cranky mom!

You will need to download a mealplanner if your dietican does not

calculate the meals for you. Probably better that way anyway, cuz it

avoids dietican error. Others can tell you where to find the meal

planner, I let our dietican do the work.

You will need to know from dietican the total amount of calories for the

day and the amount of protien per day she wants your child on. With that

info, you can calculate how many meals and snacks you want and go from

there

Look in the file sections for this list, there are lots of recipes there

but you will have to recalculat them all for your daughter's stats

Best of luck

jgarig2000 wrote:

> The funniest thing happened to us on Sunday. We were sitting at the

> breakfast table and all of a sudden Hannah started having one of her

> long seizures, no warning or anything. We took her straight to the ER

> and they were able to stop it within 30 minutes of our arriving

> there. Well, her neurologist came to see her in the afternoon and

> wanted to change her to depacote? and I said, " no, I want her on the

> diet, " then she said, " well, there are other things we could do

> besides the diet. Have you heard of the vagal nerve stimulater? " and

> I said, " I will not authorize you to put my child to sleep until we

> have tried the diet. " So, she went through her spill about how hard

> it is and how deprived she will be, and I said, " I don't care, I want

> to try. " So, Hannah started her fasting on Sunday afternoon, had high

> ketons by Monday afternoon and was on the diet Monday night. Now, I

> have questions.

> I saw the recipe for the muffins but it is for a 3.5:1 ratio, how do

> I calculate for the 4:1 ratio? The dietician gave me a sheet to go

> by. Basically, it is like a diet sheet with all kinds of foods on it,

> the amount(in oz) she can have, plus the amount of margarine, oil, or

> heavy cream to be given with each food. Are these the only foods she

> can have? They didn't say anything about carbs, protein, nothing like

> that, although on the top of the sheets it tells how many carbs and

> calories and protein for each food group. I am open to any recipes

> ya'll have to share.

> Thanks

>

[Guest guest]

You need to get Dr. Freeman's book on the diet, " The Ketogenic Diet

Treatment " .

If possible, download a computer meal planner so that you can calculate

your meals. I am suspicious of a plan that is in oz. as it is generally

the practise to use grams. Do you have an accurate scale?

It is also somewhat curious that margarine, oil and cream are listed for

each food, as they are not interchangeable. If you use cream, then this

affects all the other foods as well. You should try a couple of plans

and post here to have them checked. It could be perfectly fine. I just

haven't seen a plan like you are describing.

Bill

jgarig2000 wrote:

> The funniest thing happened to us on Sunday. We were sitting at the

> breakfast table and all of a sudden Hannah started having one of her

> long seizures, no warning or anything. We took her straight to the ER

> and they were able to stop it within 30 minutes of our arriving

> there. Well, her neurologist came to see her in the afternoon and

> wanted to change her to depacote? and I said, " no, I want her on the

> diet, " then she said, " well, there are other things we could do

> besides the diet. Have you heard of the vagal nerve stimulater? " and

> I said, " I will not authorize you to put my child to sleep until we

> have tried the diet. " So, she went through her spill about how hard

> it is and how deprived she will be, and I said, " I don't care, I want

> to try. " So, Hannah started her fasting on Sunday afternoon, had high

> ketons by Monday afternoon and was on the diet Monday night. Now, I

> have questions.

> I saw the recipe for the muffins but it is for a 3.5:1 ratio, how do

> I calculate for the 4:1 ratio? The dietician gave me a sheet to go

> by. Basically, it is like a diet sheet with all kinds of foods on it,

> the amount(in oz) she can have, plus the amount of margarine, oil, or

> heavy cream to be given with each food. Are these the only foods she

> can have? They didn't say anything about carbs, protein, nothing like

> that, although on the top of the sheets it tells how many carbs and

> calories and protein for each food group. I am open to any recipes

> ya'll have to share.

> Thanks

>

>

>

> " 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!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

[Guest guest]

I'm so glad for Hannah and you!

Your very brave and determined to have told the Neurologist the way

it's going to be. Way to go! Your determination is one of the tools

needed to be successful on the diet; there probably will be other

times in the future when the doc will try to persuade you to drop the

diet and go with another medication. Remember your determination to

get and keep Hannah med free, when people challenge you and the diet.

The fact that " they " have so much to say about why the diet will not

work is an indication that not much support will be found there.

Have " they " ever had a kid on the diet before? Don't worry, there

are many knowledgeable folks here that can and will help you through

the " bumps in the road " ahead. Very good advice to get a copy of " The

Ketogenic Diet " 3rd Ed. by JM Freeman; it's considered by most to be

the Ketogenic Bible. You will avoid many problems if you follow the

book closely. We use the book as our main referrence often.

We don't trust anybody elses calculations unless we double check them

ourselves. The fact that you were given amounts in ounces is very

suspitious; as stated before, all of us measure in grams (28 grams in

an ounce). The diet food amounts must be applied in grams and to an

accuracy of 1 tenth of a gram. Our scale is in grams, can measure

upto 250 grams in tenths of a gram. If your off by an ounce that's 28

grams, holy cow!!

We found that the best keto meal planner is the free one from

Stanford University. Best because you can calculate as many " meals "

as you need. Another " nameless " one only lets you calc 3 meals a day;

not any good for us because we need to calc 4 meals a day. We plug in

the calories per day, protein per day and the ratio, then the planner

gives the acceptable amounts of protein, fat and carbohyrates (in

grams only). Then we select the foods and the amounts (in grams), and

the planner shows the amounts to be compared to the acceptable

amounts and the total calories, and ratio for that meal.

The Stanford Meal Planner Link

http://www.stanford.edu/group/ketodiet/download.html

Also, in order to fine tune and stay in " good " ketoisis, we monitor

urine ketones and urine specific gravity with the Bayer Multi-Stix

10SG urine reagent strips. We check every pee that Logan has with

these to make sure ketones & gravity are good. Also available are the

Bayer Keto-Stix which measure ketones only. We found the Multi-Stix

10SG are best priced at CanadaPharmacy.com 100 stix for $44. They can

also be purchased from some local drug stores.

Some tips:

Calicium >> we use CalMagZinc II liquid from Whole Life (see the

files section of our group)

Vitamins >> we use Poly-Vi-Sol liquid (sugar free)

Constipation >> " Fleets " emema works great for us.

Fever >> " Feverall " Tylenol suppositories work well for us

Sweetener >> we use liquid saccrine

Read as much as you can about the diet; we find it facinating and

have learned so much. Be a detective about every aspect especially

when the " bumps in the road " come up. Be a " mad scientist " because

every kid is different and your the " expert " when it comes to Hannah.

Read all of the files posted in our group and save the ones you need

for the future issues. Check out the links in our group many are very

informative and useful too.

I hope you guys do well with the diet. Logan is doing great on the

diet!

Ketogenically, Pete

PS: How old is Hannah and can you tell us a brief history about her

epilepsy?

[Guest guest]

I have a digital scale that does grams and ounces. I appreciate your

advice and have found a meal planner and will post it so ya'll can

help me with it.

Thanks

[Guest guest]

Thanks,

I did find it. As with you I also have started out with a calculator.

I had to buy on that converts fractions (it's been a while since I

did it). I am at work and am waiting for my husband to call and give

me all of the information on my papers, they gave me at the hospital,

so I can do the meal planner.

[Guest guest]

I ordered the book 2 weeks ago and am just waiting for it to come in.

I did find the meal planner that you are talking about and have

downloaded it. I'm now starting to get very concerned. You are the

second one who has told me that it is generally measured in grams not

ounces, now I'm beginning to wonder if the ones at the hospital even

know what they are doing. I am waiting for my husband to call me from

home to give me the information (%protein, carbs, fats, and calories)

so I can do the meal planner. I will let ya'll know what it says. I

don't think I had a keto team, per say, I had the neurologist,

nutritionist, and I spoke with the hospital pharmacist. She didn't

stay in the hospital but 2 days and she didn't get the eggnog shake

I've heard ya'll talk about. Her first meal, second, and third meals

were 1/2 of the amount of food she was suppose to have on the diet,

and her fourth meal was the full diet. Does that sound right? I can't

wait for the book to come in so I can make sure I'm doing this right.

I do check Hannah's ketones but they didn't tell me to check anything

else. They said to just make sure she stays in moderate to high

ketosis at all times and that I don't need to check it but once a

day. OK, now I'm really worried. I feel like they put her into

ketosis and aren't giving me all of the information I need to make

this work. I feel like they want me to fail with this. Now I really

need help. THANK GOD I HAVE ALL OF YOU TO TURN TO.

[Guest guest]

I forgot to tell you, Hannah is 21/2 years old. She was born with

ventriculaomegaly, a Dandy- cyst, and agenesis of the corpus

collosum. Bascially she has an inoperable fluid cyst at the base of

her skull which keeps spinal fluid from draining form her head like

it should,therefore the fluid built up and she had to have a shunt in

May. She started having very small seizures when she was about 6

months old. I thought she was having little muscle spasms, they

didn't look like seizures,(and I work in a hospital and have seen

alot of seizures) but they put her on lamictal, and in February of

this year, she started having seizures that last as long as 4 hours.

It is very hard for them to stop the seizures once they start.

Usually Hannah will have small seizures that last only a few seconds

and they are spaced apart, then they get more frequent until she has

a really big one. I am so hoping this diet will work. Thanks for your

help.

[Guest guest]

Everything is in the book. Sometimes the information is hard to find and

there are a couple of small errors, but it is the bible for the diet.

Most of your questions will be answered there.

Most dieticians don't have the resources to do the diet. It is very time

consuming. It goes against everything they were taught about nutrition.

You wouldn't be the first person to get less than perfection from this

part of the keto team. You should check the menus when you get the meal

planner.

Doing the fast, then going with part meals and eventually full meals is

the normal way to do it. The shake is just easy to do and is complete,

so it doesn't matter how much is consumed. It has the correct ratio.

Ketones are all that are needed to be measured on the diet. However,

there are some serious side effects possible on the diet and your keto

team should be doing regular blood tests to make sure that nothing is

out of whack. There can also be physical tests done to catch any

physical side effects from the diet.

Worrying about your keto team is normal. They may be inexperienced and

have false ideas about the effectiveness of the diet. One thing they are

probably right about is that the diet is difficult. But most parents and

children feel that the benefits are worth it.

The diet is very nutritionally inadequate. You need to use a good

multi-vitamin and mineral supplement. Have you been given a prescription

for one?

Good luck and keep asking questions.

Bill

jgarig2000 wrote:

> I ordered the book 2 weeks ago and am just waiting for it to come in.

> I did find the meal planner that you are talking about and have

> downloaded it. I'm now starting to get very concerned. You are the

> second one who has told me that it is generally measured in grams not

> ounces, now I'm beginning to wonder if the ones at the hospital even

> know what they are doing. I am waiting for my husband to call me from

> home to give me the information (%protein, carbs, fats, and calories)

> so I can do the meal planner. I will let ya'll know what it says. I

> don't think I had a keto team, per say, I had the neurologist,

> nutritionist, and I spoke with the hospital pharmacist. She didn't

> stay in the hospital but 2 days and she didn't get the eggnog shake

> I've heard ya'll talk about. Her first meal, second, and third meals

> were 1/2 of the amount of food she was suppose to have on the diet,

> and her fourth meal was the full diet. Does that sound right? I can't

> wait for the book to come in so I can make sure I'm doing this right.

> I do check Hannah's ketones but they didn't tell me to check anything

> else. They said to just make sure she stays in moderate to high

> ketosis at all times and that I don't need to check it but once a

> day. OK, now I'm really worried. I feel like they put her into

> ketosis and aren't giving me all of the information I need to make

> this work. I feel like they want me to fail with this. Now I really

> need help. THANK GOD I HAVE ALL OF YOU TO TURN TO.

>

>

>

> " 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!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

[Guest guest]

YESSSSS!!! Good for you for standing your ground and getting Hannah

started.

I, too, can't believe that you were given oz. as a measuring unit for

the diet. Don't worry, though. As long as your scale measures grams

you will be fine. We are only measuring to the gram, not tenths. It

will be harder if your dietician isn't trained in the keto diet, but

there are some experienced folks in this group who will help. I have

a friend here in town who is a registered dietician. She knows about

the keto diet but isn't specifically trained to do it. She's the

first to say that it is important to work with a dietician who is

keto trained. Her nephew was on the diet for about 6 mo. She made

sure her sister took him to a medical center that is well versed in

the diet. It would be great if you could eventually get in to a

medical center with a keto team. I don't know what I would do

without our team. I talk to the dietician the most -- she's very

knowledgable about the diet and very reassuring. We also have a

great neurologist, a social worker and a chaplain. Are you still

trying to get into Houston or elsewhere?

In the meantime, while you are waiting for the book, I would suggest

that you figure out about 3-4 meals and stick to those. You can

expand later on. The one thing our dietician STRESSED at initiation

is consistency. The planner will help so much. I can't imagine

being without it! Be as accurate as you possibly can when you weigh

and scrape as much food as possible out of the dish/plate when Hannah

eats. Protein is set between 1.0 and 1.5g per kg of body weight per

day. Younger children get closer to the 1.5 and older children get

closer to the 1.0. The child's activity level plays a role in

setting the correct protein level, as does current weight

(underweight, overweight etc.) You should have been given a certain

number of grams of protein for Hannah to eat each day. That's what

you put into the Stanford planner.

Also, were you given a target range of fluids to give Hannah? That

info is also in the book:

body weight = 1-10kg fluid allotment = 80ml/kg

10-20kg 800ml + 40ml/kg

>20kg 1200ml + 20ml/kg

This is roughly 80% of maintenance for healthy, active children.

Keto kids typically need to be a bit dehydrated. You don't want her

too dehydrated, though. You will find the right fluid intake for

Hannah over time. We checked urine twice a day for ketones and

specific gravity for the first month. We got pretty good at judging

specific gravity by the color of the urine. Now we just use

ketostix, still twice a day. Once a week, in the morning when urine

is most concentrated, we use multistix to check for blood (a sign of

kidney stones). Since it's there on the stick, we also record the

specific gravity. (While we were starting out in the hospital we

checked ketones and sp. grav. with every void.) It is important to

check ketones at least twice a day. They tend to be lower in the

morning because all the food from dinner has been burned. Often,

ketones are lower in the a.m. -- our daughter's are. However, at

night, you want to see stronger ketones, usually 80-160 mg/dl. If

you consistently see 160 and you are having problems, that would be

something to investigate. Our daughter does best around 80. Other

kids need to be closer to 160.

The way I see it, the only way to " fail " on this diet is to not try

it. You will learn so much about your child. You just have to give

it your all until you know for sure that it isn't giving you the

results you want...and that can take some time. We were lucky and

got seizure control right away. I have to attribute that to our

terrific team. They figured it out on the first try. Even so,

they've been doing minor adjustments, mostly with calories and

protein, about every two weeks. Even if, in the end, you decide it's

not for you, you will have lost nothing because the meds weren't

working either, right??

Have you seen the video put out by the Charlie Foundation? You can

get a copy from them at www.charliefouondation.org They request a

$10 donation. I think it is well worth it. It is filmed at s-

Hopkins. Several children and their parents share their experience

with the diet and Dr. Freeman gives a good, basic, explanation of the

diet. The book, obviously, goes in to much more detail. Our

daughter really liked seeing the kids -- it helped her to know that

other kids were really doing this too... and it was working. At 2

1/2, Hannah might not get that. But, as a parent, I also found it

very encouraging and it really helped to decreased my " this is going

to be so hard to do " worries. One of the moms in the video laughs

about giving her son the same thing for the first eight meals before

feeling confident enough to try out others. I loved that!

So glad Hannah is a keto kid!

Cammie

[Guest guest]

YESSSSS!!! Good for you for standing your ground and getting Hannah

started.

I, too, can't believe that you were given oz. as a measuring unit for

the diet. Don't worry, though. As long as your scale measures grams

you will be fine. We are only measuring to the gram, not tenths. It

will be harder if your dietician isn't trained in the keto diet, but

there are some experienced folks in this group who will help. I have

a friend here in town who is a registered dietician. She knows about

the keto diet but isn't specifically trained to do it. She's the

first to say that it is important to work with a dietician who is

keto trained. Her nephew was on the diet for about 6 mo. She made

sure her sister took him to a medical center that is well versed in

the diet. It would be great if you could eventually get in to a

medical center with a keto team. I don't know what I would do

without our team. I talk to the dietician the most -- she's very

knowledgable about the diet and very reassuring. We also have a

great neurologist, a social worker and a chaplain. Are you still

trying to get into Houston or elsewhere?

In the meantime, while you are waiting for the book, I would suggest

that you figure out about 3-4 meals and stick to those. You can

expand later on. The one thing our dietician STRESSED at initiation

is consistency. The planner will help so much. I can't imagine

being without it! Be as accurate as you possibly can when you weigh

and scrape as much food as possible out of the dish/plate when Hannah

eats. Protein is set between 1.0 and 1.5g per kg of body weight per

day. Younger children get closer to the 1.5 and older children get

closer to the 1.0. The child's activity level plays a role in

setting the correct protein level, as does current weight

(underweight, overweight etc.) You should have been given a certain

number of grams of protein for Hannah to eat each day. That's what

you put into the Stanford planner.

Also, were you given a target range of fluids to give Hannah? That

info is also in the book:

body weight = 1-10kg fluid allotment = 80ml/kg

10-20kg 800ml + 40ml/kg

>20kg 1200ml + 20ml/kg

This is roughly 80% of maintenance for healthy, active children.

Keto kids typically need to be a bit dehydrated. You don't want her

too dehydrated, though. You will find the right fluid intake for

Hannah over time. We checked urine twice a day for ketones and

specific gravity for the first month. We got pretty good at judging

specific gravity by the color of the urine. Now we just use

ketostix, still twice a day. Once a week, in the morning when urine

is most concentrated, we use multistix to check for blood (a sign of

kidney stones). Since it's there on the stick, we also record the

specific gravity. (While we were starting out in the hospital we

checked ketones and sp. grav. with every void.) It is important to

check ketones at least twice a day. They tend to be lower in the

morning because all the food from dinner has been burned. Often,

ketones are lower in the a.m. -- our daughter's are. However, at

night, you want to see stronger ketones, usually 80-160 mg/dl. If

you consistently see 160 and you are having problems, that would be

something to investigate. Our daughter does best around 80. Other

kids need to be closer to 160.

The way I see it, the only way to " fail " on this diet is to not try

it. You will learn so much about your child. You just have to give

it your all until you know for sure that it isn't giving you the

results you want...and that can take some time. We were lucky and

got seizure control right away. I have to attribute that to our

terrific team. They figured it out on the first try. Even so,

they've been doing minor adjustments, mostly with calories and

protein, about every two weeks. Even if, in the end, you decide it's

not for you, you will have lost nothing because the meds weren't

working either, right??

Have you seen the video put out by the Charlie Foundation? You can

get a copy from them at www.charliefouondation.org They request a

$10 donation. I think it is well worth it. It is filmed at s-

Hopkins. Several children and their parents share their experience

with the diet and Dr. Freeman gives a good, basic, explanation of the

diet. The book, obviously, goes in to much more detail. Our

daughter really liked seeing the kids -- it helped her to know that

other kids were really doing this too... and it was working. At 2

1/2, Hannah might not get that. But, as a parent, I also found it

very encouraging and it really helped to decreased my " this is going

to be so hard to do " worries. One of the moms in the video laughs

about giving her son the same thing for the first eight meals before

feeling confident enough to try out others. I loved that!

So glad Hannah is a keto kid!

Cammie

[Guest guest]

I think your correct in your assumption that Hannah has not been on the

diet long enough to see true success. From all the information I have

gathered and read, the diet can take months to iron out. Some children

respond with in a week but I think that is often rare. Hang in there

mom, the diet has a good success rate.

, mom to Ethan

Re: hannah's a keto kid!!!

It's funny you should ask about the lamictal. Hannah started out

having, what I thought were muscle spasms(like when you are almost

asleep and your muscle jerks) and her neurologist saw her do it and

said it was a seizure and put her on lamictal. She was on lamictal

until February, when she had a 21/2 hour seizure, then she added

phenabarb. to it. We had an allergic reaction to the phenabarb and

she added dilantin to the lamictal and d/c'd to phenabarb, then we

had another seizure(lasting 3hours 40 minutes) so she stopped the

dilantin added trileptal-another allergic reaction-so then she put

her on Keppra, along with the lamictal and even though she continues

to have seizures, the neurologist continues to increase the Keppra.

In my opinion, she didn't start having " seizures " until she started

taking the seizure medications. Another thing is that Hannah has had

3 seizures in the last 2 days. Now, with Hannah, she usually has

small seizures that last about 30 seconds and she has them about

every 4-6 weeks and then she has one that will last as little as 2

1/2 hours or as long as 4 hours. The doctor has a very hard time

stopping them, but this didn't start until after she was put on

medication. She started having the small seizures last year in

December, about 2 weeks after my mother died, and we chalked it up to

the stress that she was sincing from us, but it has gotten

progressively worse. When she does eventually have a big seizure and

she goes into the hospital, usually just overnight, then she doesn't

start having them again for another 4-6 weeks and it starts all over

again. When she has these last 3 seizures I told my husband that I

was going to consult my support group and see if it is normal for her

to have an increase in seizures because she has had an increase in

seizures over the last 2 weeks. I think she just hasn't been on the

diet long enough, yet. It's only been a week.

Jolanda mom of Hannah