Re: delurking with questions

[Guest guest]

Hi ,

When we decided to explore the keto diet as treatment for our

daughter's seizures, I read Dr. Freeman's book and lots of other

information about using the diet alone as well as with meds. I was

convinced that it made sense to us to try it without meds. We met

with 3 keto teams and found that two of them were not in favor of

reducing meds until some improvement in seizure control was

achieved. I learned that even s-Hopkins doesn't usually wean

meds until the diet is " in place " and a good degree of improvement in

seizure frequency is achieved. This was very disheartening, but we

decided to talk to the third keto team anyway, and see if we could

convince them to let us try the diet without meds. Lo and behold,

that is generally their recommendation, too. They feel very strongly

that the only way to know if the diet will work is to not have any

interference from drugs. They asked us to commit to at least 3

months, preferably 6 mo. to allow for fine tuning. We had been

messing with meds for almost a year, so we were happy to agree to

that. Truly, we couldn't image that things could get any worse.

Besides, with all the other variables in the diet... ratio, calories,

protein, etc... how would we know if our best efforts at fine tuning

were bein sabotaged by drugs on board? The drugs had not been our

allies before. Why would we that to change if the diet was added to

them? We stopped Depakote after 12 hours of ketosis in the hospital

at initiation. Our daughter was one of the lucky ones who had

seizure control immediately and permanently... so far. Obviously,

because of our experience I believe that getting rid of the meds. is

step #1. I think your toleration for seizures fits in there, too. I

don't think there is the same " right " answer for everyone but I will

say this... our team told us that their success rate was about the

same as reported by Hopkins and others who do the diet... 1/3 greatly

improved, 1/3 improved enough to stick with the diet, and 1/3 not

helped enough to stick with it. However, our success along with many

other success stories our team has told us anecdotally with no

statistics attached, it surely SEEMS like their success rate is

higher than they report.

Cammie

[Guest guest]

Thanks for the responses.

First, I wanted to clarify that all changes have been made one at

a time and waiting two weeks to report back in with what had

been going on. She had been sick twice in the first month and

most of those seizures were explainable by illness. Thats when

we began having problems being 80 - 160 with Ketones.

Secondly, we initiated at Hopkins. I am just looking for others

experiences.

My dream, like everyones is seizure free and med free. I will

hold to it. My gut tells me the meds have only made her worse,

new seizures with more frequency ove the past year. My biggest

lesson is patience with the slow changes, which I do unerstand

why and think it is important, just hard to watch this sweet child

go through this, seems so unfair to her.

> Hi may name is and my daughter, (4), started

the

> diet in January. I've been reading here since August knowing

> that this was the path we were on. She has improved greatly

> on the diet and know that it is doing something. She is still

> having seizures . We have changed from 3:1 to 4:1 and now

> we just dropped 120 calories. She has grown 1 1/8 inch and

her

> weight is still above norm (she should be at 36 lbs according

to

> charts). They dropped her Phenobarbital by a little more than

half

> at initiaion and left the Lamictal were it was. (32.4 mg for P and

> 125x's 3 for L).

>

> With all of that here is my question - Is it more important to get

> rid of meds and then fine tune or vice a versa? I'm sure there

is

> not an easy answer to this question. Just looking for advice. I

> am not willing to give up - feel as though we really won't know

> how well it works until off all meds!

>

> TIA for any info, it really means alot to me to be able to read

here!

>

>

[Guest guest]

Thanks for the responses.

First, I wanted to clarify that all changes have been made one at

a time and waiting two weeks to report back in with what had

been going on. She had been sick twice in the first month and

most of those seizures were explainable by illness. Thats when

we began having problems being 80 - 160 with Ketones.

Secondly, we initiated at Hopkins. I am just looking for others

experiences.

My dream, like everyones is seizure free and med free. I will

hold to it. My gut tells me the meds have only made her worse,

new seizures with more frequency ove the past year. My biggest

lesson is patience with the slow changes, which I do unerstand

why and think it is important, just hard to watch this sweet child

go through this, seems so unfair to her.

> Hi may name is and my daughter, (4), started

the

> diet in January. I've been reading here since August knowing

> that this was the path we were on. She has improved greatly

> on the diet and know that it is doing something. She is still

> having seizures . We have changed from 3:1 to 4:1 and now

> we just dropped 120 calories. She has grown 1 1/8 inch and

her

> weight is still above norm (she should be at 36 lbs according

to

> charts). They dropped her Phenobarbital by a little more than

half

> at initiaion and left the Lamictal were it was. (32.4 mg for P and

> 125x's 3 for L).

>

> With all of that here is my question - Is it more important to get

> rid of meds and then fine tune or vice a versa? I'm sure there

is

> not an easy answer to this question. Just looking for advice. I

> am not willing to give up - feel as though we really won't know

> how well it works until off all meds!

>

> TIA for any info, it really means alot to me to be able to read

here!

>

>

[Guest guest]

Thanks for the responses.

First, I wanted to clarify that all changes have been made one at

a time and waiting two weeks to report back in with what had

been going on. She had been sick twice in the first month and

most of those seizures were explainable by illness. Thats when

we began having problems being 80 - 160 with Ketones.

Secondly, we initiated at Hopkins. I am just looking for others

experiences.

My dream, like everyones is seizure free and med free. I will

hold to it. My gut tells me the meds have only made her worse,

new seizures with more frequency ove the past year. My biggest

lesson is patience with the slow changes, which I do unerstand

why and think it is important, just hard to watch this sweet child

go through this, seems so unfair to her.

> Hi may name is and my daughter, (4), started

the

> diet in January. I've been reading here since August knowing

> that this was the path we were on. She has improved greatly

> on the diet and know that it is doing something. She is still

> having seizures . We have changed from 3:1 to 4:1 and now

> we just dropped 120 calories. She has grown 1 1/8 inch and

her

> weight is still above norm (she should be at 36 lbs according

to

> charts). They dropped her Phenobarbital by a little more than

half

> at initiaion and left the Lamictal were it was. (32.4 mg for P and

> 125x's 3 for L).

>

> With all of that here is my question - Is it more important to get

> rid of meds and then fine tune or vice a versa? I'm sure there

is

> not an easy answer to this question. Just looking for advice. I

> am not willing to give up - feel as though we really won't know

> how well it works until off all meds!

>

> TIA for any info, it really means alot to me to be able to read

here!

>

>