Re: Please Help - Advice on what might be happening with Jake

May 31, 2004

Amy,

Don't despair! Even though Jake's seizures returned, it is my

understaning that good initial seizure control is always a good sign

that the diet will work. Other's here have had a lot of experience

with the thier children screaming in pain early in the diet. Did

you read the letter posted a few days ago about 's

experience? My son is 11, and though he never screamed in pain,

there have been times when I know he is not tolerating the 4.5:1

ratio he is on. He often experiences reflux as he eats. Once he

said, " I have to burp but I can't! This feels horrible! It is like

being in hell! " I imagine that if he were young like Jake, and

didn't have the words for what he was feeling, he would have been

screaming bloody murder. I don't have answers for dealing with the

pain, but others will have suggestions for you. Just know that your

present set-back is just a set-back; it doesn't mean that you won't

get good seizure control. It does't mean that Jake's little body

cannot tolerate the diet. I know it is so hard to see your child in

pain, but, hang in there.

Gretchen

> Hi!

> I'm fairly new - we've been on keto for almost a month and I

> introduced us to this forum recently. My son, Jake, is 21 months

> old. We had an amazing 3 weeks seizure free immediately after

> starting the diet. It was the most thrilling and wonderful thing

> ever - I really thought we were getting control; 3 weeks seemed

like

> such a long time... Anyway, this past Friday night we drove to

the

> beach for the weekend. While we were in the car, Jake got really

> upset like something was bothering his stomach. He had been

acting

> on and off like he had a tummy ache for about a week, but Friday

it

> all seemed to escalate and he screamed for 2 straight hours in the

> car. I have to say that Jake NEVER cried before the diet - he was

> always a happy and content child. We were willing to tolerate the

> increased irritability for seizure control, but now it seems like

he

> is in outright pain. Then, to make things worse, his seizure came

> back with a vengeance on Saturday morning. So, I wanted to ask

all

> of you two questions. First of all, do you have any ideas what

> could be causing this awful stomach pain? Secondly, do you have

any

> thoughts on why he would go for 3 weeks with no seizures at all

and

> then suddenly they're back? Is this typical for keto and is it

> possible that he just needs some adjusting?

>

> I'm feeling so sad that we lost control overnight. It was truly

> like having the most wonderful gift in the world and having it

> snatched right out of your hand! It is frustrating and saddening.

>

> Hugs to all the kids and thanks for any advice you might have.

>

> Amy, mom to Jake

June 1, 2004

Reflux, constipation, dehydration, illness, other. Dr. Freeman's book

goes over a lot of reasons for loss of control, and fine-tuning.

Bill

Amy wrote:

> Hi!

> I'm fairly new - we've been on keto for almost a month and I

> introduced us to this forum recently. My son, Jake, is 21 months

> old. We had an amazing 3 weeks seizure free immediately after

> starting the diet. It was the most thrilling and wonderful thing

> ever - I really thought we were getting control; 3 weeks seemed like

> such a long time... Anyway, this past Friday night we drove to the

> beach for the weekend. While we were in the car, Jake got really

> upset like something was bothering his stomach. He had been acting

> on and off like he had a tummy ache for about a week, but Friday it

> all seemed to escalate and he screamed for 2 straight hours in the

> car. I have to say that Jake NEVER cried before the diet - he was

> always a happy and content child. We were willing to tolerate the

> increased irritability for seizure control, but now it seems like he

> is in outright pain. Then, to make things worse, his seizure came

> back with a vengeance on Saturday morning. So, I wanted to ask all

> of you two questions. First of all, do you have any ideas what

> could be causing this awful stomach pain? Secondly, do you have any

> thoughts on why he would go for 3 weeks with no seizures at all and

> then suddenly they're back? Is this typical for keto and is it

> possible that he just needs some adjusting?

>

> I'm feeling so sad that we lost control overnight. It was truly

> like having the most wonderful gift in the world and having it

> snatched right out of your hand! It is frustrating and saddening.

>

> Hugs to all the kids and thanks for any advice you might have.

>

> Amy, mom to Jake

>

June 1, 2004

Hi Amy, sorry to hear that a seizure came back after three weeks.

How frustrating! The only thing I can think of is constipation. Do

you use Milk of Magensia, I use that with Kristan and she gets MCT

oil which helps with her BM's. I'm sure the other parents will have

better thoughts.

Good luck.

Satnam, mom to Kristan, 19 months

Keto kid since August 2003

> Hi!

> I'm fairly new - we've been on keto for almost a month and