Re: Our introduction!, Welcome

[Guest guest]

Hi , welcome to our group. My son Noah is 3 and seizure-free on the diet. He

has Doose Syndrome which seizures I have heard is similar to LGS in some ways.

I have a document in the files section that you might want to check out. It's

the 3rd file down, labeled: A- Ketogenic Diet Initiation.doc. It's a parent's

perspective on starting the diet, what to expect, etc. Maybe you can find that

to be of some help. Sounds like you are already on the ball and getting well

prepared. Please keep us posted and let us know if you have any more questions!

Mom to Noah- age 3, med-free, & seizure-free on the keto diet

Lutz byhisgrace8@...> wrote:

Hello All,

I have just been " approved " to join this group and I am looking forward to

getting to " know " everyone! This group came highly recommended because we

will be starting the keto diet soon, and I could really use any tips you

have to offer in getting started.

First, a little background...

My name is and I am the mother of a 5 1/2 year old little

blonde-haired, blue-eyed princess named Adrielle. Once you meet her you

fall in love forever!

She has global developmental delays, functional feeding issues (she cannot

bite/chew & eats only soft solids that she can mash with her tongue), she is

non-verbal but communicates using PECS (picture exchange communication

system), and has the diagnosis of Autism and Lennox-Gastaut Syndrome. In

working with her challenges.... Adrielle has 38 hours per week of intesive

therapy for children with Autism called ABA (Applied Behavior Analysis), 1

hour of OT per week, 1 hour of feeding therapy per week, and 1 hour of PT

per week. She also attends pre-school with TSS support one day a week for 2

hours. As far as Epilepsy and LGS is concerned.... " A " was diagnosed with

Epilepsy when she was 2. (Autism at 2 1/2) She started out with absence and

complex partial seizures and latter added Atonic seizures. She has only had

one grand mal seizure to date. We have " failed " several meds and she is

currently on Lamictal and Zonegran. She was diagnosed with LGS in March

2004. As is typical with this syndrome, we have battled to maintain control

of her seizures and lost control once again approximately 2 months ago. We

were given the option of introducing 3 other medications, or, begin the

diet. After researching I knew without a doubt what we needed to do. So,

on Sunday October 31st we will be admitted to the hospital to begin the diet

and I am absolutely confident we are doing the right thing!!!

What advice do you have for someone who is just getting started? Let me

tell you what we are already doing. I have purchased and I am reading " The

Keto Diet " by Dr. Freeman.. 3rd edition, I have already purchased a gram

scale from the hospital, and I plan to try a few " recipes " with her before

entering the hospital to see how she handles them (just to see how to best

get the oils/butter in her in a way she will accept them.... we are not

using cow's milk therefore no heavy cream).

I must admit that I have not gone through any of the archives yet, and I am

sure that there is a wealth of information to be found there, but we are in

the middle of potty training and I probably won't have time to go there

anytime soon!

Aside from advice I would love to hear about your success stories and even

your big mistakes, or, just tell me about you. I've heard this is a

fabulous group and can't wait to hear from you!

Well, being on potty patrol for 10 days has worn me out! I'm signing off

for now, but I'll talk to you again soon!

Take care~

" The Ketogenic Diet....a realistic treatment option, NOT just a last resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional keto

team!

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