As if things weren't depressing enough yesterday.

April 22, 2004

I got a firm rebuke from 's dietician telling me she can't

spend making 's meals her top priority.First off I never

expected that she should ,all I asked is for a few more than 9 meal

plans.When you times that by 3 meals a day those are the same three

meals over and over and I wanted her to give us some more that he's

familiar with, like chicken alfredo without the noodles.I knew I

would have problems over at Children's they have 1 dietician to 55

kids and it's impossible for her to give us much time.I told her just

give me the #'s I need for the stanford planner,and by the way what

do you need #'s wise body weight in kilo's?protein needs? anyway I

told her just give me the #'s and I'll do it myself.In order for this

to be a success for us I am going to need variety for him,because

he's 12.I just feel like every time i talk to her now I'm just a big

bother.I feel like first off isn't this what she's getting paid for?

and we are just starting this and when my son has low blood sugar

issues and is too high in ketosis,shouldn't I be able to call with my

concern?Do any of you go through this?Any help would be

appreciated.Linn

April 22, 2004

Linn,

I have been thinking a bitmore about your situation.

I am thinking that perhaps is to ketotic, or whatever the

word is. What is his blood ketone level? That would explain his

mood. It might also explain why you are having trouble with the

menus. For a lot of kids, nine different menus would be a lot. He

just must not be hungry (because his ketones are supressing his

appetite). If his ketones came down, he might be hungry enough to

eat just about anything you put in front of him. Of course, you may

face the opposite problem, having to go to bed feeling hungry or

still being hungry at the end of the meal. Be prepared to deal

withthis situation. Somewhere I think there is a happy medium--

hungry enough to eat, yet not so hungry that it causes undo saddness.

You could bring his ketones down either by incresing the calories,

which would be a problem if he doesn'tlike the food to begin with,

or decreasing the ratio a bit.

Keep me posted. Did you see Ethan's letter to him?

We are having a tough day with lots of seizures. We decreased

lamictal yesterday. The nasal spray worked immedieatly with one

long set. But he is having more, now. GOtta go.

Gretchen

> I got a firm rebuke from 's dietician telling me she can't

> spend making 's meals her top priority.First off I never

> expected that she should ,all I asked is for a few more than 9

meal

> plans.When you times that by 3 meals a day those are the same

three

> meals over and over and I wanted her to give us some more that

he's

> familiar with, like chicken alfredo without the noodles.I knew I

> would have problems over at Children's they have 1 dietician to 55

> kids and it's impossible for her to give us much time.I told her

just

> give me the #'s I need for the stanford planner,and by the way

what

> do you need #'s wise body weight in kilo's?protein needs? anyway I

> told her just give me the #'s and I'll do it myself.In order for

this

> to be a success for us I am going to need variety for him,because

> he's 12.I just feel like every time i talk to her now I'm just a

big

> bother.I feel like first off isn't this what she's getting paid

for?

> and we are just starting this and when my son has low blood sugar

> issues and is too high in ketosis,shouldn't I be able to call with

my

> concern?Do any of you go through this?Any help would be

> appreciated.Linn

April 22, 2004