Re: Detroit Children's Hospital for Heidi - to

[Guest guest]

Dear Ann

When began to seizure I was told to increase the fat, add a snack at

night... so that just put her right over the edge. I was told the exact wrong

things to do!!!

First of all, was on too many calories. Reducing the calories will

probably bring up his ketones. How many is he on? What is his weight? Is he

active? Once I reduced her calories and then reduced the ratio and then again,

and then again... we not only gained control but she feels good and it shows.

My guess is that his calories are too high. Is he gaining weight? That would

indicate they are, if his height is not keeping up.

So U of M isn't any better. Hmmm... Is on Children's Special Health Care

Services? If U of M can't get him where he needs to be, perhaps CSHCS would pay

to send him elsewhere for at least a consult... like Hopkins or somewhere

else??? I would check it out.

On a lower calorie diet is doing so much better. Bill, on this board, says

that often children are put on too many calories... sure proved right with my

daughter. And, cutting them back made a huge difference, and made a lower ratio

possible. At 2.5:1 the diet isn't quite as nauseating to me, as most of her fat

is in her cream drink.

.

kenai22000 kenai22000@...> wrote:

Dear ,

Your story sounds exactly like ours except that we went thru U of

Mich. instead! Unfortunately, our insurance will not pay for

anything other than U of Mich. so all of our Detroit blood tests and

doctor bills were paid out of our pocket. Since we can't afford to do

that long-term, we are going back to U of Mich. The dietician there

was very kind but did the diet much differently than s Hopkins.

was seizure free for 3 weeks after initiation, then everything

went back to the way it was. We have tried everything under the sun

to get him back to being seizure free. The 6 different medicines we

tried made things worse, so we are stuck with the diet for now. This

group has been far more helpful than any hospital or dietician. The

people here know much more about what works. We have had a hard time

getting into ketosis. How did you know that your daughter was

in acidosis? We had 's ratio up to 4.5 for several months and

never got to that point. I can't figure out what else to do to raise

the ketones! Do you have any advice since you are doing so well??

Ann

> > I guess I never met anyone on the team other that June, the

former

> dietician.

> > We also used to see Dr. Chugani, but then switched to Bronson

> Hospital in

> > Kalamazoo which is closer as we live in Battle Creek.

> > Yes, I got the letter today from June informing us of her

> replacement and I

> > talked to this morning on the phone. She seems well

> informed so let's

> > cross our fingers!

> >

> > , do you live in Michigan?

> >

> >

> > Heidi, future occupational therapist and single mom to

(IS,

> > Severely/Multiply Impaired, Ketokid since 12/03) and twin

brother,

> (4 years), and

> > big sis Madison (6).

> >

> >

> >

[Guest guest]

First thing is to cut calories, then follow the advice in Dr. Freeman's

book. There is a list of about 13 different things that can go wrong and

how to correct! Trying new medicines isn't one of them.

Bill

kenai22000 wrote:

> Dear ,

> Your story sounds exactly like ours except that we went thru U of

> Mich. instead! Unfortunately, our insurance will not pay for

> anything other than U of Mich. so all of our Detroit blood tests and

> doctor bills were paid out of our pocket. Since we can't afford to do

> that long-term, we are going back to U of Mich. The dietician there

> was very kind but did the diet much differently than s Hopkins.

> was seizure free for 3 weeks after initiation, then everything

> went back to the way it was. We have tried everything under the sun

> to get him back to being seizure free. The 6 different medicines we

> tried made things worse, so we are stuck with the diet for now. This

> group has been far more helpful than any hospital or dietician. The

> people here know much more about what works. We have had a hard time

> getting into ketosis. How did you know that your daughter was

> in acidosis? We had 's ratio up to 4.5 for several months and

> never got to that point. I can't figure out what else to do to raise

> the ketones! Do you have any advice since you are doing so well??

>

[Guest guest]

Dear ,

Sorry it took so long to answer you. It has been a busy week!

's ketones are nice and high at night.... in the 160 range. We

had him up to a 4.5:1 ratio for a few months with absolutely no

difference in seizure activity at all. He has on average 7 seizures

(spasms) per day, with most of them occurring before 1:00 PM. He

does have 2-3 in the afternoon, though. He does get a lot of fluids

(water, ice). When we restricted them, we did not notice any

decrease. He does not have any food allergies. I use very small

amounts of Bickford chocolate, vanilla, and maple flavorings and

small amounts of Stevia. He gets no aspartame at all. I feel sorry

for him... we have him on a limited amount of food. Thanks so much

for the info on CSHCS. Maybe I got information on a different fund.

Ann

> > > > I guess I never met anyone on the team other that June, the

> > former

> > > dietician.

> > > > We also used to see Dr. Chugani, but then switched to

Bronson

> > > Hospital in

> > > > Kalamazoo which is closer as we live in Battle Creek.

> > > > Yes, I got the letter today from June informing us of her

> > > replacement and I

> > > > talked to this morning on the phone. She seems well

> > > informed so let's

> > > > cross our fingers!

> > > >

> > > > , do you live in Michigan?

> > > >

> > > >

> > > > Heidi, future occupational therapist and single mom to

> > (IS,

> > > > Severely/Multiply Impaired, Ketokid since 12/03) and twin

> > brother,

> > > (4 years), and

> > > > big sis Madison (6).

> > > >

> > > >

> > > >

[Guest guest]

Dear ,

is currently on the 4:1 ratio and his ketones have finally

gotten to where they should be. Too bad, it's not helping the

seizures! At least he is still having just as many... but we are

going to stick with it and see what happens. I have spoken to

but she didn't help me much. She couldn't tell me anything

about the new Carnitor tablets we put on. She seemed nice,

though, and at least she called me back! I am using a great meal

planner thru PHP. It is very easy to use and you can change any of

the food values easily to add new food. I think all the dietitians

have given up on us. Nobody has any more ideas, so I am reading

these messages for help. These people know more than anyone!! Good

luck on getting those ketones up. It sure is a mystery sometimes,

isn't it? I am so glad the diet is working for you!!

Ann

> > > > > I guess I never met anyone on the team other that June, the

> > > former

> > > > dietician.

> > > > > We also used to see Dr. Chugani, but then switched to

> Bronson

> > > > Hospital in

> > > > > Kalamazoo which is closer as we live in Battle Creek.

> > > > > Yes, I got the letter today from June informing us of her

> > > > replacement and I

> > > > > talked to this morning on the phone. She seems

well

> > > > informed so let's

> > > > > cross our fingers!

> > > > >

> > > > > , do you live in Michigan?

> > > > >

> > > > >

> > > > > Heidi, future occupational therapist and single mom to

> > > (IS,

> > > > > Severely/Multiply Impaired, Ketokid since 12/03) and twin

> > > brother,

> > > > (4 years), and

> > > > > big sis Madison (6).

> > > > >

> > > > >

> > > > >

[Guest guest]

Dear ,

We are in the process of weaning Vigabatrin. However was med

free for 2 months and we didn't notice much improvement. That's why

we tried the Vigabatrin. Since it only made the seizures worse (he

started falling down), I have given up on the meds. The diet is

better. Ann

> > > > > > I guess I never met anyone on the team other that June,

the

> > > > former

> > > > > dietician.

> > > > > > We also used to see Dr. Chugani, but then switched to

> > Bronson

> > > > > Hospital in

> > > > > > Kalamazoo which is closer as we live in Battle Creek.

> > > > > > Yes, I got the letter today from June informing us of her

> > > > > replacement and I

> > > > > > talked to this morning on the phone. She seems

> well

> > > > > informed so let's

> > > > > > cross our fingers!

> > > > > >

> > > > > > , do you live in Michigan?

> > > > > >

> > > > > >

> > > > > > Heidi, future occupational therapist and single mom to

>

> > > > (IS,

> > > > > > Severely/Multiply Impaired, Ketokid since 12/03) and twin

> > > > brother,

> > > > > (4 years), and

> > > > > > big sis Madison (6).

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Dear Ann

I think it will be easier to get help and " tweek " the diet without meds on

board. Less variables to deal with. Let me know how it goes. Blessings...

.

kenai22000 kenai22000@...> wrote:

Dear ,

We are in the process of weaning Vigabatrin. However was med

free for 2 months and we didn't notice much improvement. That's why

we tried the Vigabatrin. Since it only made the seizures worse (he

started falling down), I have given up on the meds. The diet is

better. Ann

> > > > > > I guess I never met anyone on the team other that June,

the

> > > > former

> > > > > dietician.

> > > > > > We also used to see Dr. Chugani, but then switched to

> > Bronson

> > > > > Hospital in

> > > > > > Kalamazoo which is closer as we live in Battle Creek.

> > > > > > Yes, I got the letter today from June informing us of her

> > > > > replacement and I

> > > > > > talked to this morning on the phone. She seems

> well

> > > > > informed so let's

> > > > > > cross our fingers!

> > > > > >

> > > > > > , do you live in Michigan?

> > > > > >

> > > > > >

> > > > > > Heidi, future occupational therapist and single mom to

>

> > > > (IS,

> > > > > > Severely/Multiply Impaired, Ketokid since 12/03) and twin

> > > > brother,

> > > > > (4 years), and

> > > > > > big sis Madison (6).

> > > > > >

> > > > > >

> > > > > >