Re: stomach problems lactose/

[Guest guest]

Dear Barbara

I have heard that where you are taking Claire is great, so worth doing it their

way, for sure. went to Michigan's Children's Hospital in Detroit. We live

in northern lower Michigan, so travelled for the initiation. She was fasted,

tested, put on the diet and I was sent home with a big notebook of menus,

exchanges, etc. Not much educating. This group has been my education re: the

diet. And, I have made my mistakes, but I am learning.

has had some bumps along the way, but is doing well, but I think she may

have to go to a lower ratio as her ketones are so high. She is on 3:1. I think

she would be a great candidate for the Atkins, if that takes off as an

alternative choice. It may be what we phase to after a couple of years, anyway.

You sound attuned to Claire, and good for you that you switched hospitals and

got with folks who want it to work! I almost think it always will, if the fine

tuning doesn't get you down. I think the professionals may give up on the fine

tuning, but we are on the front lines, with our gut feelings, and watching

watching watching, and it can work.

Keep us all posted on Claire. The exchange list isn't bad... but things were

not working out for and I needed to get on top of the situation. For you,

your situation is very supportive. Nice.

Best... , 's mum

B Eckert bjeckert@...> wrote:

Hi ,

Actually, I do have the Meal Planner and used it for the first 6 months

on the diet. But I wasn't happy with the lack of diet support at the

hospital we initiated with. Then, when Claire lost control after a

seizure-free 28 days, their only answer was to load her back up on the

drugs that were making things worse (I had slowly been weaning them on

my own, with their knowledge, and finally she had a life again). So I

have been taking her to CHoP in Philadelphia, which is anywhere from 6

to 8+hours away---but worth it to have people who believe in the diet,

understand that alot of drugs are not always a good thing and know that

some drugs don't work well with the diet. They also understand that the

final decision on any drugs is mine.

Soooo, unless I want to go searching for a new diet team (and I'm not

even sure there is another experienced one in the state where our

insurance will cover it), I'm kinda stuck with exchange system. This

team is pretty adamant about doing it their way, which means cream at

every meal, except snacks. Of course, if it looks like the cream is

having a negative effect on Claire, they wouldn't have a problem with

eliminating it--but that mean a huge amount of exchanges of pure fat.

In a way, I wish I'd never done it the other way with the planner

because it is frustrating when I can't make changes on my own, like with

the cream. But it comes in handy, too--sometimes I run through a meal

plan from the exchanges, just to ease my mind if the ratio doesn't seem

right --of course, if I didn't have the classic way to compare it too, I

guess I wouldn't worry about it ; ).

BTW, where is your center? I didn't realize that others were using the

exchanges. And how is doing?

~Barbara

Falk wrote:

> Dear Barbara

>

> We, too, were put on the " exchange list " system. Recently I have been

> using the s Hopkins Meal Planner, using the calories and ratio she

> is on, and it gives you so much more freedom and creativity for

> meals. Plain yogurt is on it. I have begun to use sour cream a bit,

> too. And, today, I was even able to work out a menu using whole

> milk... a real treat for dear . We still use cream a lot, but I

> can see what everyone else is eating and easily work up a menu for

> , mocking ours.

>

> If you have Excel, there is a free Stanford Meal Planner that can be

> downloaded.

>

> Our dietitian says only one of her families uses a meal planner...

> well, now two, since I started. I LOVE IT.

>

> ... 's mum

>

> B Eckert bjeckert@...> wrote:

> Thanks Rhonda. Well, I wanted to try the yogurt first. Did Shan's

> ketones drop when you switched to it?

> Along with tiring easily (she is very active again, but looks so tired

> much of the time...and if she's not excited about playing or going

> somewhere, she'll take a voluntary nap), Claire has been burping (biiiig

> ones sometimes--we call them monster burps). They don't appear to be

> related to reflux and I noticed it doesn't happen so much since I added

> yogurt to her diet. So if our dietician can give me a way to substitute

> the yogurt cream for the cream at each meal (our team does the diet a

> little differently, with exchanges, so I can't do it myself), I could

> get some more healthy yogurt into her and still use the cream.

> Otherwise, if I eliminate the cream entirely, she has to have a huge

> amount of straight fat (again, because of the exchange system).

> ~Barbara

>

> Rhonda Ackerman wrote:

>

> > Barbara,

> >

> > The big thing was an extreme lack of energy, but she would also have

> > stomach

> > discomfort. It seems that her stomach has always been somewhat bloated

> > since starting the diet. We were so use to her having a distended

> stomach

> > that a couple months ago we discovered that she no longer was

> > distended from

> > bloating but from weight gain.

> >

> > If you are planning on taking away the cream watch closely her ketones.

> > I've recently discovered that cream and butter are great sources for

> > producing ketones. Ketones can drop when switching to a new fat

> > source such

> > as Sunflower oil.

> >

> > Rhonda

> >

> > Rhonda,

> > This was an old post, but I'm about to do a similar experiment with my

> > Claire with the cream and all. I was wondering, though what Shan's

> > symptoms were (besides the lack of energy and continued seizures)?

> > Thanks,

> > Barbara

> >

> >

> >

> >

> >

> > " The Ketogenic Diet....a realistic treatment option, NOT just a last

> > resort! "

> >

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