Re: Re: Detroit Children's Hospital for Heidi - to Ann

[Guest guest]

Dear Ann

How are his ketones? Are they high before bed? When are his seizure times?

is about 39 lbs/40lbs and on 900 calories. And she is chubby. Short.

Can't see a bone in her!

If he is maintaining his weight, and thin, don't reduce calories! If ketones

are low, yes, maybe upping the ratio is what you need to do. How many fluids

does he get?

After 20 seizure free days, seizured. I should have given her a snack

before bed, as saw ketones lower than usual. I gave her two jello meals, and we

have not had a problem with jello before, but I made jello into frozen

popsicles.. and whatever, the ketones never rose all day like they usually do.

Maybe it was the aspartame in the jello. I only do a package of jello once a

month and have not had a problem before. Honestly, this diet is a learning

experience. Just the little stuff can make all the difference.. and that is

what I am wondering about your .

Anyway, what are his ketones like all day? Fluid intake? Do you use a lot of

sweeteners? Does he have any food sensitivities?

CSHCS was formerly called " Crippled Children's. " It is free and not based on

income. It covers what other insurances won't cover. They bought a

wheelchair when I needed something to transport her in, when she was seizuring

and too heavy for me to carry. It looks like a big deluxe stroller. Lovely.

If you had to travel to another state for treatment, could be they would cover

the part your insurance wouldn't pick up... you just have to get pre-approval.

It started as a Trust from the Dow family in Midland. Now the state handles the

monies.

.

kenai22000 kenai22000@...> wrote:

Dear ,

Thanks so much for your reply. I was told the same thing you were

told about adding fat at night. I thought that was kind of strange

since I wasn't told to decrease his calories to make up for it!

is on 1075 calories per day. He weighs 17.2 kg or a little less than

38 lbs. U of Mich. started him at 1442 calories.. Wow! I think he

is at about the right weight. He is awfully thin.. you can see all

his bones. He has stayed at this weight for a couple months now. I

do have the packet for Children's Special Health Care. So far, we

have not spent enough for medical to make it worthwhile to us. We

have already checked into s Hopkins... they won't take us because

we started the diet elsewhere. Both 's Dr. and I spoke with them

about it. They recommended Detroit Children's Hospital. That's why

we went there. What do you think about the ratio? He is on 4:1, and

I have been afraid to drop it any further.

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

So is still on the 4.5 : 1 ratio? whoa... that is pretty high for any

length of time. Can he maintain ketosis on a lower ratio? Poor guy. That is

till a lot of seizures to endure every day.

Rhonda has messed around with the amount of protein and carbs, and I tend to

mess with them, too, when I am having to play with amounts to get the ratio.

She uses more protein and less carbs... Have you ever done this? Do you use a

planner. Would be hard to do otherwise.

You may try contacting the new dietitian via phone. Since he is on their list

she may have ideas on how to tweek the diet for . Heidi seems pleased

working with her, and I will call her next time I need help to see if she can

help.

My daughter has begun to have lower ketones at night. Not good. I may be

raising her ratio a bit to see if I can get them consistently high by bedtime.

I don't like to do a snack, as getting her to bed seems hard enough. She has

done so well on the ratio she is on for weeks, then suddenly a drop in

ketones... and no known reason.

Oh, well. The diet is working. For this I am thankful. . Let me know

how it goes with new dietitian if you call.

kenai22000 kenai22000@...> wrote:

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 Ann

Are you weaning meds? Meds can be the reason the diet isn't working... as you

see from all the postings. .

kenai22000 kenai22000@...> wrote:

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).

> > > > >

> > > > >

> > > > >