Re: Hello again and update

[Guest guest]

It's good to have you back Deb! ...you really have been through a tough

time...but i know that you like the rest of us here will keep plugging away

in the hope that we can provide our kids with the best possible chance at

good health and quality of life.

Leah (10 yrs) is 23 months into this diet and has been mostly sz free but it

seems the diet has to be very finely tuned for her, especially with

calorie/wt control, for her to be sz free.

I am hopeful that we can begin to wean her sometime in the coming year, but

am not raising my hopes too high as to the final outcome coz this epilepsy

is so unpredictable, as you well know!

I am just glad that my faith which lies in God, allows me to do my best

for Leah and then leave the rest to Him!

Best wishes to you and Nate,

Jeanette, Australia

>

>Reply-To: ketogenic

>To: " Egroups diet list " <ketogenic >

>Subject: Hello again and update

>Date: Tue, 1 Jan 2002 09:46:04 -0500

>

>Hi, all, this is Debbie Reynolds, back again for a while. I had to stop

>this list for a while, too much mail. I missed you all.

>

>UPDATE: After 19 months on the diet with good control but not

>seizure-free,

>and down to a 3.3 to 1 ratio, we lost all our help at home in August and

>had

>to switch to more of an Atkins style diet. Worked fabulous for 6-8 weeks,

>then Nate started fighting us worse than ever. Added to the worst

>transition we've ever had starting third grade, and some SERIOUS issues

>which need to be resolved at school, things just went all to H in a hurry.

>Trying very hard to keep Nate in ketosis led to a roller-coaster effect, in

>one day, out the next, and massively increased seizures. We decided to

>stop

>the diet and increase his zonegran (zonisamide) and concentrate on handling

>the autism/school issues if we could just maintain some kind of control.

>We

>felt terrible about it, and the diet has worked better for us than

>anything,

>but.....

>something had to give.

>So, we have slightly less control than on the diet, but still very

>manageable. He's more prone to seizures when sick than he was on the diet.

>I have been reading some articles (can't remember where I found them!)

>which

>indicated that kids do better on meds after stopping the diet than they did

>before, that the diet's effect lasts a longer time than previously

>suspected. Very interesting research.

>I will be " listening in " for a while, anyone who wants to " catch up " with

>me

>privately, feel free, it's nater@... and I will be fascinated to see

>how well you all are doing after my several months absence! Love, Deb

>Reynolds, mom to Nate, keto-kid 01-09-00 to 10-01. non-verbal autism,

>intractible epilepsy, with far more potential than anyone will admit!!

>

>

>

>

>

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[Guest guest]

Hi Debbie,

Welcome back. Good to know that Nate is doing fairly well

even off the diet. We are still hanging in there - just about!

Love

Saro