Re: which way/Adam?

September 28, 2004

Adam-

Our story is a bit different than most - when we

initiated the diet, my son (then, 1.5 yrs.) was only

on 55mg. of Lamictal (not a very high dosage). One

wk. into the diet, things went downhill rapidly.

Prior to the diet, he was not delayed in any area but

speech - and even speech was minimally delayed and he

was above average in every other area. One wk. after

initiation, he lost coordination - couldn't stand up

for any more than 30 sec. and we noticed two NEW

seizure types. We were hit hard by starting the diet.

Neuro's told us it was a medication issue - that we

needed to increase the Lamictal. We followed their

advice w/adverse affects. We continued this route for

3 months by which time, my son had 4 additional

seizure

types added to the mix and regressed substantially.

It wasn't until I found this group and decided to wean

medication that I noticed a significant change. There

again, we had a terrible time w/withdrawal seizures

during the wean but I was determined to give the diet

a try without meds on board as I was convinced I had

nothing to lose.

My son has been med free since March of this year.

Since then, my son has shown drastic developmental

progress over a 6 month time span. The therapists

can't believe the improvement. He lost so much during

the 4 initial months he was on the diet and during the

wean (which lasted 4 months as well)so he is currently

significantly delayed in all areas but making up lost

time rapidly now.

My advice would be to get off the medication before

you opt to wean the diet. Your son deserves the

opportunity to experience the diet med free. For some

kids, it makes or breaks the diet.

We are currently tweaking the diet and it is VERY time

consuming, but I, personally, am 110% convinced this

diet can work for US if we tweak until optimal control

is achieved.

Good luck!

(mom to - 2.5yrs. old - ketokid since

6/03 - med free since 3/27/04 - working on the seizure

free part w/con't success)

adam@...> wrote:

> Hi

> I just wanted to ask the group their opinion as we

> are seriously

> thinking of weaning our daughter, Amelie off the

> diet. It's not

> been an easy decision, having read so many wonderful

> and

> positive experiences on the site. Our daughter has

> been on the

> diet for 6 months, she has achieved good ketone

> levels and we

> have seen very little improvement( if any) in terms

> of seizure

> control. For a short time we really believed that

> things were

> improving but now on reflection we think we'd just

> been

> deluding ourselves. She has very low energy

> threshhold and we

> hate depriving her of the one thing she can do

> really well, eating

> food, she used to love meal times but now hates

> them.

>

> We are at a cross roads in her treatment as we know

> things will

> have to change. She is also on epilim which some

> parents have

> suggested can effect the potential of the diet. Our

> gut reaction is

> to wean off the diet and see where we stand, this

> route will

> undoubtedly lead to trials with other combinations

> of AED's. I'm

> sure you can relate to our terror in going this

> route. Another

> option might be to stay with the diet, hoping for

> future progress

> and wean off the epilim with the hope that siezures

> don't

> increase. ( Our neuro believes the epilim has been a

> stabalising

> factor on her siezures) This route would almost

> certainly go

> against his advice.

>

> Do any parents out there have experience that might

> inform our

> decision

>

> Thanks for your help

> best wishes

>

> adam stone

>

__________________________________________________

September 29, 2004

Dear Adam,

My son Keenan(2 1/2 yrs) was on Epilim, Lamictal and Topomax when starting the

diet. He was extremely lethargic and hardly had the energy to chew !

We soon discovered that he had virtually no carnitine in his system and was

runnning around within 24 hrs of treatment.

We then weaned Topomax,and started weaning Epilim.

We noticed at first that he would have seizures about three days after reducing

medication (The wean was proving to be too quick for him !)

We then started weaning much more slowly - we now have six weeks to go before he

is off Epilim and I don't even worry about seizures - he is doing so well - he

does get grumpy and miserable a few days after reducing meds, but it evens out.

He is looking and acting so much more vibrant - his balance is so much better

and he is gaining more and more strength. I agree with Michele, our children

deserve the chance to be med free. The difference in development is huge for us

and we haven't even finished weaning. For 12 months Keenan did not develop as he

was maybe just trying to cope with all the medications and many many seizures