New dietician-new calcs need input

[Guest guest]

We met with a dietician yesterday who is very experienced as a dietician but

minimally exp as a keto dietician. She has had a few kids on the diet that

were tube fed. But she is very interested in the keto diet and our neuro is

trying to get a keto clinic started here in Indpls. outside of Riley. I

have talked to Jim Abrams twice this week with the Charlie Foundation about

getting a keto dietician trained here. It was awesome to talk to him. That

was

the highlight of my week.

Anyways, please look at the calcs and see what you think. She was showing

us the growth curve and saying that his stats are appropriate and his

calculations are designed to make him lose weight which he doe not need to and

because of longevity on the diet etc. I am so confused and scared b/c this is

a

big increase. He really is doing well and is not seeming hungry since we have

worked on the fluids.

Right now he is

2:1 ratio

1290 cals

26 g protein

he is 47.5 pounds and 45 inches tall

She suggested

2:1 ratio

1485 calories

33.8 g protein

I am nervous about this increase. What do you think? I hate to question

the dietician but I'm worried about too many calories.

I don't understand the basic premise with the growth curve, ideal weight

etc. He is in the 10th percentile for weight and height. He is not chubby at

all but is not skinny either. He really looks good and seizures are

definitely moving away from us. We haven;t seen any this week. However, if he

could

be allowed more cals and esp protein I would like to give it to him

Thoughts???

Thanks

[Guest guest]

,

is a small kid and his dad is about 5'10 and his uncles are

pretty much the same of my husbands side so I don't think that he would be a

tall

guy either way. The dietician feels like with the longevity of the diet and

him being so small, we could afford to up his protein. In the past, when he

got to many calories he was hungry and so I am afraid to go up but we may

just try to go up 25 at a time like the book says. She also suggested that we

up the snacks, not the meals and make the night time snack larger to help

keep ketones large and keep the am seizures away. The good news is that his

seizures in the am have lessened and actually went away for a few days. I'm

afraid to say gone b/c its been such a short time but they are going away.

PRAISE GOD!

How is ? Are you having more success with the increased ratio and

calories? What about her moods? I am hoping they are better. Its so hard to

deal

with.

Thanks for your input-I'll get my book out tonight again but I just value

the input from this list

[Guest guest]

Dear

Just whatever you do, take it slow. And keep checking his weight, ketones, etc.

So nothing goes out of whack.

is sunnier on a higher ratio and just pulling out of a bout of seizures

that has left her rather worn out. However, she is no longer constantly wanting

to be fed with the higher ratio and higher ketones, and that sure is a relief.

I was getting like your mother... feeling like I was depriving her, chubby as

she is!

Yes, the book says increase them ever so slowly. Great news on seizure control.

What a wonderful difference for him. I am so happy for both of you. .

lloydandleslie@... wrote:

,

is a small kid and his dad is about 5'10 and his uncles are

pretty much the same of my husbands side so I don't think that he would be a

tall

guy either way. The dietician feels like with the longevity of the diet and

him being so small, we could afford to up his protein. In the past, when he

got to many calories he was hungry and so I am afraid to go up but we may

just try to go up 25 at a time like the book says. She also suggested that we

up the snacks, not the meals and make the night time snack larger to help

keep ketones large and keep the am seizures away. The good news is that his

seizures in the am have lessened and actually went away for a few days. I'm

afraid to say gone b/c its been such a short time but they are going away.

PRAISE GOD!

How is ? Are you having more success with the increased ratio and

calories? What about her moods? I am hoping they are better. Its so hard to

deal

with.

Thanks for your input-I'll get my book out tonight again but I just value

the input from this list

[Guest guest]

,

We had the same experience. We had a good dietician but inexperienced on

the diet. She calculated 1290 calories and we wound up with 830

calories. She also wasn't given enough time or resources to do the diet

properly. Most people have no idea about the complexity and time needed

to do the diet properly.

If he is doing well, I would insist on waiting for some time(at least

one month?) and measuring weight and height very precisely. If you want

to increase protein for some reason, that is a separate issue. However,

if things are going particularly well, i.e. improved, I would even

hesitate to make that change.

Bill

lloydandleslie@... wrote:

> We met with a dietician yesterday who is very experienced as a dietician but

> minimally exp as a keto dietician. She has had a few kids on the diet that

> were tube fed. But she is very interested in the keto diet and our neuro is

> trying to get a keto clinic started here in Indpls. outside of Riley. I

> have talked to Jim Abrams twice this week with the Charlie Foundation about

> getting a keto dietician trained here. It was awesome to talk to him. That

was

> the highlight of my week.

>

> Anyways, please look at the calcs and see what you think. She was showing

> us the growth curve and saying that his stats are appropriate and his

> calculations are designed to make him lose weight which he doe not need to and

> because of longevity on the diet etc. I am so confused and scared b/c this

is a

> big increase. He really is doing well and is not seeming hungry since we

have

> worked on the fluids.

>

> Right now he is

>

> 2:1 ratio

> 1290 cals

> 26 g protein

> he is 47.5 pounds and 45 inches tall

>

> She suggested

> 2:1 ratio

> 1485 calories

> 33.8 g protein

>

> I am nervous about this increase. What do you think? I hate to question

> the dietician but I'm worried about too many calories.

>

> I don't understand the basic premise with the growth curve, ideal weight

> etc. He is in the 10th percentile for weight and height. He is not chubby

at

> all but is not skinny either. He really looks good and seizures are

> definitely moving away from us. We haven;t seen any this week. However, if

he could

> be allowed more cals and esp protein I would like to give it to him

>

> Thoughts???

> Thanks

>

>

>

>

[Guest guest]

Cammie

Thanks for your input. This dietician is a pediatric dietician with several

years of exp and is getting her doctorate so hopefully it will work out. I

agree with you and have not made any changes yet. So far, he is holding his

weight. He is not hungry (not begging I should say-he is always hungry) and

doing well. We haven't seen a seizure in a week. Thats the longest stretch

since July but I'm trying not to get too excited as the let downs just are

harder that way.

We will watch and see. I would like to go up on the protein if not the

calories. We may try that in a few weeks. That will help him grow. I think

he

needs more but again.....patiently waiting.

Hows your keto kiddo doing??

[Guest guest]

,

So glad you found a dietician to help you. The fact that she is

interested in the keto diet is very much to her credit. I hope that

she will be able to get some " official " training. According to our

dietician, who has a specialty in pediatrics and began doing the diet

14 years ago, there is quite a learning curve... she was telling me

how " far they have come " since they started. You'd never know it

now... she's a pro... but we all gotta start somewhere, I guess.

So... like you, I don't want to contradict the dieticians expertise

but I think she's asking for a huge calorie jump. I really hope she

doesn't want you to do it all at once. Just my 2 cents...Since you

think things are going well now, I would keep doing what you are

doing, keeping weekly ht. and wt. Weigh him before his breakfast on

the same day of the week, wearing the same clothing (preferably just

underwear). I would do this at least two weeks, maybe longer

depending on what happens. Then, if he's losing weight (and

especially if he also gains height) I would consider adding SOME

calories. The rule we have always gone by is small changes, one at a

time, with at least two weeks in between. Especially since all is

well right now, you will have a good idea of what made things worse

if that should happen later on.

Cammie

> We met with a dietician yesterday who is very experienced as a

dietician but

> minimally exp as a keto dietician. She has had a few kids on the

diet that

> were tube fed. But she is very interested in the keto diet and

our neuro is

> trying to get a keto clinic started here in Indpls. outside of

Riley. I

> have talked to Jim Abrams twice this week with the Charlie

Foundation about

> getting a keto dietician trained here. It was awesome to talk to

him. That was

> the highlight of my week.

>

> Anyways, please look at the calcs and see what you think. She was

showing

> us the growth curve and saying that his stats are appropriate and

his

> calculations are designed to make him lose weight which he doe not

need to and

> because of longevity on the diet etc. I am so confused and scared

b/c this is a

> big increase. He really is doing well and is not seeming hungry

since we have

> worked on the fluids.

>

> Right now he is

>

> 2:1 ratio

> 1290 cals

> 26 g protein

> he is 47.5 pounds and 45 inches tall

>

> She suggested

> 2:1 ratio

> 1485 calories

> 33.8 g protein

>

> I am nervous about this increase. What do you think? I hate to

question

> the dietician but I'm worried about too many calories.

>

> I don't understand the basic premise with the growth curve, ideal

weight

> etc. He is in the 10th percentile for weight and height. He is

not chubby at

> all but is not skinny either. He really looks good and seizures

are

> definitely moving away from us. We haven;t seen any this week.

However, if he could

> be allowed more cals and esp protein I would like to give it to him

>

> Thoughts???

> Thanks

>

>

>

>

[Guest guest]

,

A week with no seizures is great. I know what you mean about getting

too excited too soon, but you surely seem to be on the right track.

Let's just hold good thoughts and pray that the worst is behind you.

It is hard when our keto kids are hungry. Sounds like you've got a

pretty good trooper on your hands, though. Maybe you can add some

protein and/or cals. soon. The ironic thing is that sometimes more

cals. makes kids even hungrier. The trick is to find the right

amount to keep them as satisfied as possible (it's never perfect, I

don't think) while keeping ketones where they need to be. If you are

at 2:1 ratio, must make ketones fairly easily and/or not

need really high ketones for seizure control. My is like that,

too and it does make the diet easier.

Thanks for asking about . She's doing wonderfully. We are on a

very slow wean off the diet. She's at about .5:1 ratio now. We

aren't weighing any more--just counting carbs. Still pretty much

avoiding really sugary things but she can have potatoes, rice, beans,

pasta etc. according to her carb allowance. She did have a small

piece of her best friend's birthday cake at her party a week ago and

no problems. So, we are hoping that it's just a matter of time--

staying the course and gradually increasing carbs until we are back

to a normal diet.

How great that you were able to talk with Jim Abrams. He is

certainly hero in my book. I'd love to be able to tell him that in

person or at least, on the phone. We will always be grateful to him

and to Dr. Freeman and the folks at Hopkins for bringing the diet

back " into the light " . I can't even think where we might be today if

we hadn't done the diet.

Cammie

[Guest guest]

Hi ,

Sounding good

I too would be cautious about too many cals increased at once - we usually do

25-50 cals at a time wherever possible, except for a big jump up we did twice

when went into a catabolic state, but he had lost seizure control as a

result back then, so we didn't have much choice, and basically nothing to

lose....

If is controlled at the mo, I would do small increments up every

2-3 weeks or so, with the aim of reaching his ideal stats - otherwise if too

many cals are put on at once, it will be a while till the body grows enough to

go back to the state of mimicing starvation on that higher cal level, and the

period in between could therefore be a rocky one seizure wise.

Re the possibility of an increase in protein to help with growth, our

dietician told me that this would not happen unless there was suffucient cals in

total for growth on board as well. Otherwise the extra protein on it's own would

be used for energy/sustenance etc as part of the overall cal allowance, only

diff being that protein is glucose producing, and according to other dieticians

at diff centres - turns to sugar more readily than even straight carbohydrate if

in excess of the 'current' body requirements - meaning a possible drop in ketone

levels.

I haven't ever tried it here though, so it's not something we have seen

personally, either a result of increased growth or lower ketones.

We plod on and stick to the 1gm prt per kg of body weight, increasing it up

gradually as D's cals and height/weight goes up.

Re: Re: New dietician-new calcs need input

Cammie

Thanks for your input. This dietician is a pediatric dietician with

several

years of exp and is getting her doctorate so hopefully it will work out. I

agree with you and have not made any changes yet. So far, he is holding

his

weight. He is not hungry (not begging I should say-he is always hungry)

and

doing well. We haven't seen a seizure in a week. Thats the longest

stretch

since July but I'm trying not to get too excited as the let downs just are

harder that way.

We will watch and see. I would like to go up on the protein if not the

calories. We may try that in a few weeks. That will help him grow. I

think he

needs more but again.....patiently waiting.

Hows your keto kiddo doing??