Re: We are being referred to Seattle -- Linn

[Guest guest]

Linn--

Earthlink blocked my private reply to you as spam (????), so I will post this

publicly.

Rose-Marie

Re: We are being referred to Children's hospital in Seattle for keto

diet.........

Hi Linn--

Just wanted to say hello, we are also doing the Keto diet through Seattle

Children's. You're the only one I've ever seen on the keto list who is also

going through them. Where are you from? We live in North Bend, 30 miles east

of Seattle.

My nearly 8yr-old daughter has been on the keto diet for two years, but since

she is tube fed I don't know how much advice about I can offer about how to

manage the food when it is designed to eat by mouth. Other folks on the list

can help you there. What I can tell you is that the diet has improved seizure

control about 90% and allowed us to discontinue all her sz meds (she also went

through six of them) and that has let us see how many " lost " skills were buried

under a drug haze. We are seeing parts of her that we didn't know still

existed, and had worried may have been permanently lost to seizure damage or to

her syndrome. We are seeing sz's slip back in, but it is nowhere near the level

it was before the diet.

There are some wonderful young neuros at Seattle Children's, but also some real

frustrations at the way the neurology clinic is managed. We see Saneto

and absolutely love him!!!! was one of his first patients when he came

to Seattle from Cleveland two years ago, and he oversaw her keto initiation. We

hung on to him but good! You may have to be a little bit insistent that they

see you on a schedule that fits YOUR needs, as in every three months (when

they'd rather see you every six).

As far as preparing for the diet, I would recommend reading the Freeman book,

" The Ketogenic Diet, A Treatment for Epilepsy. " Also, I would read some Atkins

or other low-carb cookbooks to play around with recipes might like. They

may have to be modified when he actually starts the diet, but if you know in

advance what he is most apt to enjoy, then the dietician can work from those

recipes. The dietician at Children's is fairly new to the keto program. She

seems very nice and she works hard, though we have had little contact with her,

as the dietician who saw us through the first 1 1/2 years has moved out of

state. In addition to seeing what low-carb, high-fat recipes enjoys,

this will help his body become accustomed to the new metabolism. My husband and

I read the Atkins books over the summer, and in many ways we came to understand

the shift in metabolism much better than with the Freeman book. I wish we'd

read " The New Diet Revolution " before ever started the keto diet.

There are things you will need to collect ahead of time, such as a scale and

rubber spatulas and those WONDERFUL little ZipLoc half cup containers (I love

those!!). You'll want to find a good source of cream (Costco carries Wilcox,

which is really high fat, low additives, and the cheapest source...we use it

ourselves with the Atkins diet and it's wonderful).

If meds aren't the answer, the keto diet is certainly worth a try. At very

worst, it won't work. You still haven't lost anything. But the possibilities

that it might help, since it seems to work on a different mechanism than the

drugs, are so encouraging. It's worth giving it a fair shot. It's not easy,

but if it works...does " ease " even matter then?

Wishing you the best,

Rose-Marie,

mom to (age 7 1/2),

North Bend, WA USA

[Guest guest]

Linn--

Oh, please don't get me wrong that we aren't getting adequate help from Seattle

Children's. You just need to spell out up front what it is you need in the way

of support and ask them for that. The new dietician is very nice and had

responded when I've called; we just don't need to call much anymore. Our neuro

there is wonderful about replying to emails, and any email contact I've had with

the dietician has been answered promptly too. As much as they'd like to put

everyone on a 6-month call back schedule, if you tell them you feel a different

schedule is necessary, I don't think they would refuse. Also, at the beginning

of the diet they did want to keep track of every 3 months, although I

talked with the dietician and nurse by phone a LOT before that first call back.

The biggest problem we've had has been return calls from the nurses, but the

problems they deal with tend to be less keto related and more just general

health. They are the ones who call in lab tests, etc....so if your local neuro

nurse can do these things, you might be just fine. Also, they've just added

another nurse to the Seattle neuro clinic; maybe that's going to relieve some of

the problems? And remember, sometimes a family neuro reminding another

neurology clinic that they have a responsibility to their patient goes a l-o-n-g

way if needed. ;0)

I can understand your concerns about switching your son's diet when he is used

to eating what he likes in the amounts he enjoys. It is a big adjustment. The

questions you posted in your note, " We are just going to be starting... " were

excellent, very specific. Folks will have ideas for you.

Like the one about sweeteners...Spenda is not allowed in its powdered form

because it uses a carb as an anti-caking agent. But many folks (us included)

find that Splenda-sweetened sodas are fine (0 carbs). Some people use stevia as

a sweetener, though it isn't recommended through CHMRC and I haven't been as

successful with it as others have. The former Seattle dietician limited us to

saccharin, which I only use for sweetening Kool-Aid and whipping cream, so the

amounts are small enough that there is no aftertaste. I was aghast at the

thought of using it, but in two years we haven't finished our first bottle yet.

We ordered our scale online. My recommendation would be to get one that

measures at least 400g (because bowls and plates you measure onto weigh a

surprising amount), has a TARE (reset to zero) button, and measures to the

1/10th gram. A wall adapter will save you money on batteries in the long run.

We purchased a AND HL 400, which has been a pleasure to use. Here's the

retailer we used: http://search.balances.com/scales. They did call me to make

sure it was a valid use and that I wasn't making illegal drugs, so if a scale

retailer calls you don't be alarmed.

The Freeman book has some recipes, but you can also dig through the keto files

for recipes and sign up at Yahoo for " ketorecipes. " I think the members tend to

be folks on this list? Not sure, as I signed up for access to the posts rather

than to receive email, and I've never checked the archives, silly me! There is

a commercially available cookbook--can someone direct Linn to that resource?

I know nothing about hypertension--sorry I can't help there!

Before you get overly worried about starting the diet, please read Dr. Freeman's

book, The Ketogenic Diet: A Treatment for Epilepsy. It's the gold standard used

by most clinics, including CHMRC. You can find it at amazon.com. It may be a

little more stringent than many clinics have found necessary, and even Seattle

was willing to fine tune our daughter in ways that differed from the Freeman

suggestions.

You are doing the right thing to ask, ask, ask. If you want to talk to me by

phone, please email me privately and I'll send you the number. I'd post it here

because I don't mind anyone on the list having it, but Yahoo isn't as secure as

I'm comfortable as far as general public access. Thanks for understanding. Our

server, if it doesn't come across in the header, is msn.com.

Rose-Marie,

mom to , age 7 1/2

[Guest guest]

Well I will be thoroughly bugged if they tell me we can't use Splenda

like how the other gals suggested.I think in the liquid flavors it

would be good to put into things.Does your daughter eat at all or is

she solely fed by tube?I hope we get in there before May my son is

having so many seizures everyday it's frightening.Linn

> Linn--

>

> Oh, please don't get me wrong that we aren't getting adequate help

from Seattle Children's. You just need to spell out up front what it

is you need in the way of support and ask them for that. The new

dietician is very nice and had responded when I've called; we just

don't need to call much anymore. Our neuro there is wonderful about

replying to emails, and any email contact I've had with the dietician

has been answered promptly too. As much as they'd like to put

everyone on a 6-month call back schedule, if you tell them you feel a

different schedule is necessary, I don't think they would refuse.

Also, at the beginning of the diet they did want to keep track of

every 3 months, although I talked with the dietician and nurse

by phone a LOT before that first call back. The biggest problem

we've had has been return calls from the nurses, but the problems

they deal with tend to be less keto related and more just general

health. They are the ones who call in lab tests, etc....so if your

local neuro nurse can do these things, you might be just fine. Also,

they've just added another nurse to the Seattle neuro clinic; maybe

that's going to relieve some of the problems? And remember,

sometimes a family neuro reminding another neurology clinic that they

have a responsibility to their patient goes a l-o-n-g way if

needed. ;0)

>

> I can understand your concerns about switching your son's diet when

he is used to eating what he likes in the amounts he enjoys. It is a

big adjustment. The questions you posted in your note, " We are just

going to be starting... " were excellent, very specific. Folks will

have ideas for you.

>

> Like the one about sweeteners...Spenda is not allowed in its

powdered form because it uses a carb as an anti-caking agent. But

many folks (us included) find that Splenda-sweetened sodas are fine

(0 carbs). Some people use stevia as a sweetener, though it isn't

recommended through CHMRC and I haven't been as successful with it as

others have. The former Seattle dietician limited us to saccharin,

which I only use for sweetening Kool-Aid and whipping cream, so the

amounts are small enough that there is no aftertaste. I was aghast

at the thought of using it, but in two years we haven't finished our

first bottle yet.

>

> We ordered our scale online. My recommendation would be to get one

that measures at least 400g (because bowls and plates you measure

onto weigh a surprising amount), has a TARE (reset to zero) button,

and measures to the 1/10th gram. A wall adapter will save you money

on batteries in the long run. We purchased a AND HL 400, which has

been a pleasure to use. Here's the retailer we used:

http://search.balances.com/scales. They did call me to make sure it

was a valid use and that I wasn't making illegal drugs, so if a scale

retailer calls you don't be alarmed.

>

> The Freeman book has some recipes, but you can also dig through the

keto files for recipes and sign up at Yahoo for " ketorecipes. " I

think the members tend to be folks on this list? Not sure, as I

signed up for access to the posts rather than to receive email, and

I've never checked the archives, silly me! There is a commercially

available cookbook--can someone direct Linn to that resource?

>

> I know nothing about hypertension--sorry I can't help there!

>

> Before you get overly worried about starting the diet, please read

Dr. Freeman's book, The Ketogenic Diet: A Treatment for Epilepsy.

It's the gold standard used by most clinics, including CHMRC. You

can find it at amazon.com. It may be a little more stringent than

many clinics have found necessary, and even Seattle was willing to

fine tune our daughter in ways that differed from the Freeman

suggestions.

>

> You are doing the right thing to ask, ask, ask. If you want to

talk to me by phone, please email me privately and I'll send you the

number. I'd post it here because I don't mind anyone on the list

having it, but Yahoo isn't as secure as I'm comfortable as far as

general public access. Thanks for understanding. Our server, if it

doesn't come across in the header, is msn.com.

>

> Rose-Marie,

> mom to , age 7 1/2

>

>

>

>

[Guest guest]

Linn, the dietician will be there to guide you and give you all the support

you need. But it will be YOU who makes the meals for your little boy. It

won't work if you can't get him to eat it and you will do what you must. I

don't think any dietician would have a problem with you using products with

Splenda. They may worry about using in the powdered form but you can

ultimately make that decision yourself. Welcome to the world of taking your

child's treatment into your own hands.

Best wishes,

Ann Shepard

Well I will be thoroughly bugged if they tell me we can't use Splenda

like how the other gals suggested.I think in the liquid flavors it

would be good to put into things.Does your daughter eat at all or is

she solely fed by tube?I hope we get in there before May my son is

having so many seizures everyday it's frightening.Linn

> Linn--