questions for you keto gurus

[Guest guest]

Hi keto pros,

I’ve been lurking on here for a few weeks, and I’ve already learned a ton of

stuff! Thanks for all the info.

Tomorrow is the 2 month anniversary of ’s epilepsy diagnosis. And, thanks

to persistence, a good neuro, a bad eeg, lots and lots of seizues, and some dumb

luck, we’re already on the diet.

Our keto team is at OHSU in Portland, OR. Things are done differently here, but

the success rate is very good and they’ve been at it a long time, so I believe

whole-heartedly that they know what they’re doing. We started the first week by

simply giving a lot more fat. We also got our liquid stevia and started

using that instead of sugar. And, subconsciously quit giving him carbs. Just

as a test, I checked his urine ketone levels after a few days of this and they

were very high. Yikes! Since we weren’t monitoring anything we got a little

scared and put some carbs in him. His ketones were back down to 0 the next day

(and ironically this was his best seizure day in quite awhile). The next week

(which was just last week) we started for real, but only at a 2:1 ratio. His

ketones went up right away and have looked good ever since. His blood glucose

levels have fluctuated quite a bit as we’re learning what will and won’t

eat. Up until today, it seemed that he would have slightly fewer seizures with

lower glucose readings, just as the dietician predicted. This morning he had a

glucose reading of 67, which I believe is low (at least for us so far). But,

he’s had a rather bad seizure day.

Anyway, his seizures have only marginally improved if at all over this first

week. I was sort of under the impression that if this diet is going to be real

successful, that we would see more of a change very early on. I know there is a

long fine tuning process, but we were so hopeful that we’d see some change right

away, that we’re disappointed right now. In any case, we’re in this for the

long haul. The thought of getting rid of some meds inspires us as much as

decreasing the seizures.

Other info:

is 25 months old.

Weight: 12kg (actually slightly less now).

The first neuro said his seizures could not be classified into any type. In

fact, she said she’d only seen one other case like this in 20 years. Our

current neuro called them myoclonics right from the start. His head simply

drops (actually forced down). They only last a half a second to 3 or 4 seconds

each. 1-20 per cluster. 8-18 clusters/day.

Drugs: Depakene (300ml/day), Tranxene (7.5mg/day), Topomax (75mg/day until

yesterday, when we went down to 60mg/day)

So, is there anyone out there that saw big improvements, but not until after a

few weeks? If so, was it because you had trouble getting into ketosis early, or

something else?

Anybody else have the diet initiated in this way, and how did it go?

Considering the drugs is on, which would you get rid of first? We don’t

see any huge side effects from the depakene or tranxene, but they did zilch for

the seizures, and may have actually made them worse. The Topomax seemed OK

until we hit about 60mg, at which point it would take him 1-2 hours to fall

asleep. This one “may” have slightly helped the seizures, though. My current

thinking is to take the topomax down to 45mg first, then start working on the

depakene.

Thanks!

-

P.S. Is it just me, or is the software for figuring out meals really lacking?

I’m using the Stanford meal planner spreadsheet, which is adequate, but far from

ideal. Is the Hopkins program a lot better? Or, is it worth my time to write

my own?

[Guest guest]

,

Wow... what a story. Good for you for trying keto so soon. I've

heard some really good things about the keto folks at OSHU, too.

Definitely don't want to second guess them but... out of the three

meds that is on, three of them are not keto friendly.

Decreasing (getting rid of??) Topamax is a good start. I hope they

will want to wean the other two shortly.

Based on our experience, I don't think you can know what the diet can

really do until the meds are gone and the diet is going it alone.

Our team stopped Depakote when we initiated the diet. I think it was

huge factor is our success.

I use the Stanford planner, too, and really like it. I have about

100 meals in it now. I deleted a lot of foods that we wouldn't use

(all the baby foods and formula) and added the ones we do use. Our

dietician gave me a good " in-service " on the Stanford planner when we

initiated. It would take me forever to try to write my own but if

you feel up to it, I'd say go for it! You could suit it exactly to

your needs.

Cammie

> Hi keto pros,

> I've been lurking on here for a few weeks, and I've already learned

a ton of stuff! Thanks for all the info.

>

> Tomorrow is the 2 month anniversary of 's epilepsy diagnosis.

And, thanks to persistence, a good neuro, a bad eeg, lots and lots of

seizues, and some dumb luck, we're already on the diet.

> Our keto team is at OHSU in Portland, OR. Things are done

differently here, but the success rate is very good and they've been

at it a long time, so I believe whole-heartedly that they know what

they're doing. We started the first week by simply giving a lot

more fat. We also got our liquid stevia and started using that

instead of sugar. And, subconsciously quit giving him carbs. Just

as a test, I checked his urine ketone levels after a few days of this

and they were very high. Yikes! Since we weren't monitoring

anything we got a little scared and put some carbs in him. His

ketones were back down to 0 the next day (and ironically this was his

best seizure day in quite awhile). The next week (which was just

last week) we started for real, but only at a 2:1 ratio. His

ketones went up right away and have looked good ever since. His

blood glucose levels have fluctuated quite a bit as we're learning

what will and won't eat. Up until today, it seemed that he

would have slightly fewer seizures with lower glucose readings, just

as the dietician predicted. This morning he had a glucose reading of

67, which I believe is low (at least for us so far). But, he's had a

rather bad seizure day.

> Anyway, his seizures have only marginally improved if at all over

this first week. I was sort of under the impression that if this

diet is going to be real successful, that we would see more of a

change very early on. I know there is a long fine tuning process,

but we were so hopeful that we'd see some change right away, that

we're disappointed right now. In any case, we're in this for the

long haul. The thought of getting rid of some meds inspires us as

much as decreasing the seizures.

>

> Other info:

> is 25 months old.

> Weight: 12kg (actually slightly less now).

> The first neuro said his seizures could not be classified into any

type. In fact, she said she'd only seen one other case like this in

20 years. Our current neuro called them myoclonics right from the

start. His head simply drops (actually forced down). They only last

a half a second to 3 or 4 seconds each. 1-20 per cluster. 8-18

clusters/day.

> Drugs: Depakene (300ml/day), Tranxene (7.5mg/day), Topomax

(75mg/day until yesterday, when we went down to 60mg/day)

>

>

> So, is there anyone out there that saw big improvements, but not

until after a few weeks? If so, was it because you had trouble

getting into ketosis early, or something else?

> Anybody else have the diet initiated in this way, and how did it go?

> Considering the drugs is on, which would you get rid of

first? We don't see any huge side effects from the depakene or

tranxene, but they did zilch for the seizures, and may have actually

made them worse. The Topomax seemed OK until we hit about 60mg, at

which point it would take him 1-2 hours to fall asleep. This

one " may " have slightly helped the seizures, though. My current

thinking is to take the topomax down to 45mg first, then start

working on the depakene.

>

>

> Thanks!

> -

>

> P.S. Is it just me, or is the software for figuring out meals

really lacking? I'm using the Stanford meal planner spreadsheet,

which is adequate, but far from ideal. Is the Hopkins program a lot

better? Or, is it worth my time to write my own?

[Guest guest]

,

Wow... what a story. Good for you for trying keto so soon. I've

heard some really good things about the keto folks at OSHU, too.

Definitely don't want to second guess them but... out of the three

meds that is on, three of them are not keto friendly.

Decreasing (getting rid of??) Topamax is a good start. I hope they

will want to wean the other two shortly.

Based on our experience, I don't think you can know what the diet can

really do until the meds are gone and the diet is going it alone.

Our team stopped Depakote when we initiated the diet. I think it was

huge factor is our success.

I use the Stanford planner, too, and really like it. I have about

100 meals in it now. I deleted a lot of foods that we wouldn't use

(all the baby foods and formula) and added the ones we do use. Our

dietician gave me a good " in-service " on the Stanford planner when we

initiated. It would take me forever to try to write my own but if

you feel up to it, I'd say go for it! You could suit it exactly to

your needs.

Cammie

> Hi keto pros,

> I've been lurking on here for a few weeks, and I've already learned

a ton of stuff! Thanks for all the info.

>

> Tomorrow is the 2 month anniversary of 's epilepsy diagnosis.

And, thanks to persistence, a good neuro, a bad eeg, lots and lots of

seizues, and some dumb luck, we're already on the diet.

> Our keto team is at OHSU in Portland, OR. Things are done

differently here, but the success rate is very good and they've been

at it a long time, so I believe whole-heartedly that they know what

they're doing. We started the first week by simply giving a lot

more fat. We also got our liquid stevia and started using that

instead of sugar. And, subconsciously quit giving him carbs. Just

as a test, I checked his urine ketone levels after a few days of this

and they were very high. Yikes! Since we weren't monitoring

anything we got a little scared and put some carbs in him. His

ketones were back down to 0 the next day (and ironically this was his

best seizure day in quite awhile). The next week (which was just

last week) we started for real, but only at a 2:1 ratio. His

ketones went up right away and have looked good ever since. His

blood glucose levels have fluctuated quite a bit as we're learning

what will and won't eat. Up until today, it seemed that he

would have slightly fewer seizures with lower glucose readings, just

as the dietician predicted. This morning he had a glucose reading of

67, which I believe is low (at least for us so far). But, he's had a

rather bad seizure day.

> Anyway, his seizures have only marginally improved if at all over

this first week. I was sort of under the impression that if this

diet is going to be real successful, that we would see more of a

change very early on. I know there is a long fine tuning process,

but we were so hopeful that we'd see some change right away, that

we're disappointed right now. In any case, we're in this for the

long haul. The thought of getting rid of some meds inspires us as

much as decreasing the seizures.

>

> Other info:

> is 25 months old.

> Weight: 12kg (actually slightly less now).

> The first neuro said his seizures could not be classified into any

type. In fact, she said she'd only seen one other case like this in

20 years. Our current neuro called them myoclonics right from the

start. His head simply drops (actually forced down). They only last

a half a second to 3 or 4 seconds each. 1-20 per cluster. 8-18

clusters/day.

> Drugs: Depakene (300ml/day), Tranxene (7.5mg/day), Topomax

(75mg/day until yesterday, when we went down to 60mg/day)

>

>

> So, is there anyone out there that saw big improvements, but not

until after a few weeks? If so, was it because you had trouble

getting into ketosis early, or something else?

> Anybody else have the diet initiated in this way, and how did it go?

> Considering the drugs is on, which would you get rid of

first? We don't see any huge side effects from the depakene or

tranxene, but they did zilch for the seizures, and may have actually

made them worse. The Topomax seemed OK until we hit about 60mg, at

which point it would take him 1-2 hours to fall asleep. This

one " may " have slightly helped the seizures, though. My current

thinking is to take the topomax down to 45mg first, then start

working on the depakene.

>

>

> Thanks!

> -

>

> P.S. Is it just me, or is the software for figuring out meals

really lacking? I'm using the Stanford meal planner spreadsheet,

which is adequate, but far from ideal. Is the Hopkins program a lot

better? Or, is it worth my time to write my own?