Gretchen

April 21, 2004

Hi Linn,

I almost missed you posting, but I had been thinking of you ever

since you first mentioned crying daily. It sounded so

familiar. I wasn't quite right in thinking it was the lamictal wean

causing the tears, since you haven't started to wean. How long has

been on the diet?

It's great that you have seen such improvement with the diet, down

to just a few absence siezures a day. So, I think it makes sense to

hold off the weaning process. I would have preferred more of a

seizure conntroled wean and sometimes wonder what would have

happened had we waited to start the wean. I mean, maybe he wouldn't

have missed the last 4 weeks of school due to a worsening of

seizures. But on the other hand, his cognitive skills, reading, and

writing, and general lucidness have improved so much in the last

month. We are seeing the old Ethan again! I think he is actually

better off, academically, missing school and getting off the meds.

Back to 's tears. So it wasn't a lowering of the lamictal.

THen it could have been him adjusting to the higher ketones.

Perhaps loosing all that weight would cause his ketones to be

especially high, I don't know. Does he also cry because he is

hungry? It is hard for kids this age, because they know what they

are missing. Ethan has already planned all the restaurants he will

eat at and in what order when he goes off the diet. One involves

flying to his grandparents' houses in COlorado.

What dose of lamictal is on? What center are you using?

I think it is terrible that you are not getting more help from you

dieticians.

I get Ethan's fat allotment in by making hot chocolate. IN fact,

this is the only way I get it in, which has made outings

impossible. But sometimes he goes for the drink even before the

radishes or salmon, which he loves. I make it with 28g canola oil,

80g 40% cream, chocolate falvoring and sacchrine. Then I froth it

with my espresso machine frother, though I think there are hand held

frothers, too. The frothing mixes the oil nicely, so it doesn't

separtate and just float discustingly on the top.

I'm not sure what the Stanford planner is, but if it is a computer

program for making your own recipes, I would certainly purchase it.

We use a program and it has made all the difference. I have heard

of people purchasing the exact program the dieticians use.

Lastly, for now, I think it would be great for and Ethan

to talk or write. What do you think would be the best forum? I

have wanted Ethan to write to Cassandra's daughter, as well. She is

12 and struggling with the diet, too.

HOw is coping at school? How is the family coping? I

really miss not being able to bake a chocolate cake to pick up our

low spirits at time. And I miss us all going out to eat at a

favorite restaraunt.

I hope 's spirits are improving.

Gretchen

> I have wanted to talk to you,because we are in the same

boat.

> is 12 and in 6th grade and is also on lamictal.Our protocal is to

not

> start to wean meds for 6 months,which I would have liked to wean

> sooner.I have seen an incredible thing with this diet.I have seen

my

> son who used to have 50 or more absence seizures per day go down

to

> just a few and hopefully will go down to none. also has

> hypertension and I've seen his blood pressure return to normal

with

> this diet. has lost a whopping 13 lbs in a week on this

> diet ,which has also been good for him,but I'm not sure it's good

> quite so fast,plus I think that big of a change is probably

> attributing to his crankiness.Maybe our sons could write to one

> another and give each other support.I think would like it

if

> he knew someone else who was having to suffer like him in the

> beginning.Hope to talk to you again soon.Linn

April 21, 2004