timing of meals

November 1, 2004

You are a wise group of people! I wrote this weekend that 's

ketones dropped and stayed in the 40-80 (+2) range all weekend. He

had a cold - bad one - and was constipated - even worse! -. Out of

the blue they jumped back up last night! They are holding strong

around 120-160 now.

I also have a timing question. Due to daylight savings time,

(someone forgot to tell Jack about it!!) was up at 4:45! I

gave him breakfast at around 6 and was planning to give lunch around

12:30 - trying to slowly work his times to the same that they were

(breakfast at 8, lunch at 1, snack at 4, dinner at 7 - bed at 8).

Around 11:00 he got very seizure-y. He has myoclonics and had 50+

pre diet (two weeks ago). In the hospital he had about 20-25 a

day. Then, of course, he lost ketones and went back to about 40 a

day. This morning he improved having about one or two an hour.

UNTIL 11:00. He had six that hour. Which leads me FINALLY to my

question. How far apart do you guys space meals? Can waiting too

long to feed your child increase seizures especially when beginning

the diet? Should I be thinking about ketones the same way a

diabetic thinks about blood sugar? I know that may sound stupid -

please understand I'm still wrapping my mind around everything and

my little guy keeps throwing curve balls in there for me! It's now

12:25 and he has only had one SMALL jerk since I fed him.

I can't tell you how much I appreciate having all of your experience

to learn from! Sorry so long winded!

Leigh

November 1, 2004

Spacing of meals is very important for good control. You should be doing

3 meals and at least 2 snacks a day. It is exactly the same thing as

blood sugar for diabetics.

Bill

jacksondoodle2002 wrote:

>

> You are a wise group of people! I wrote this weekend that 's

> ketones dropped and stayed in the 40-80 (+2) range all weekend. He

> had a cold - bad one - and was constipated - even worse! -. Out of

> the blue they jumped back up last night! They are holding strong

> around 120-160 now.

> I also have a timing question. Due to daylight savings time,

> (someone forgot to tell Jack about it!!) was up at 4:45! I

> gave him breakfast at around 6 and was planning to give lunch around

> 12:30 - trying to slowly work his times to the same that they were

> (breakfast at 8, lunch at 1, snack at 4, dinner at 7 - bed at 8).

> Around 11:00 he got very seizure-y. He has myoclonics and had 50+

> pre diet (two weeks ago). In the hospital he had about 20-25 a

> day. Then, of course, he lost ketones and went back to about 40 a

> day. This morning he improved having about one or two an hour.

> UNTIL 11:00. He had six that hour. Which leads me FINALLY to my

> question. How far apart do you guys space meals? Can waiting too

> long to feed your child increase seizures especially when beginning

> the diet? Should I be thinking about ketones the same way a

> diabetic thinks about blood sugar? I know that may sound stupid -

> please understand I'm still wrapping my mind around everything and

> my little guy keeps throwing curve balls in there for me! It's now

> 12:25 and he has only had one SMALL jerk since I fed him.

> I can't tell you how much I appreciate having all of your experience

> to learn from! Sorry so long winded!

> Leigh

>

November 1, 2004

Leigh,

I would say that 6 1/2 hrs. is way too long between meals. Our keto

team is very big on consistency to gain seizure control. They tell

parents to think of the diet just as you would a drug. They had us

space meals and snacks so there was consistent food intake, so that

in turn, hopefully, ketones would stay at a consistent level. So, yes

it is much like a diabetic wanting to maintain a constant blood sugar

level. The overnight part is the hardest, especially when children

go to bed early. She ate breakfast at 6:30, snack at 9:30, lunch at

12:15, snack at 4:00 and dinner at 7:00. We stuck very close to

those times for about 10 months. Even now we try to have eat

regularly but we are not as exacting about the times. Her morning

snack and lunch fit in nicely with the schedule at school, so we

lucked out there.

Glad that 's ketones are up again. Did you happen to check

them before lunch? (I'd bet they had dropped some). Did I read that

you are at Hopkins? If so, you certainly are in good hands. I think

you will see things smooth out a bit this week.

Cammie

>

> You are a wise group of people! I wrote this weekend that

's