Re: Overly ketotic?Question

[Guest guest]

,

I just read your message and am hoping you can give me some

information. My son, , has been on the diet since 1/04 and we

are not having much success. His doctor wants him to start on

Vigabatrin, because he doesn't think the diet will ever work.

was diagnosed with infantile spasms at age 4. He did not have

seizures as a baby. How is Vigabatrin working for Daphne? We are

nervous to try it because of the eye problems. What side effects

have you noticed and is it helping with the seizures? Thanks!

Ann

> > > What is the new med ? Is it one that is likely to cause

sedation,

> > > either as she gets more used ot it, or as a permanent side

effect? If so,

> > > maybe it is a tad high?

> > > Or poss withdrawal related from the depakote wean?

> > > Excess keotsis can cause sleepiness but to be honest we often

have

> found

> > the

> > > opp here - hyper behaviour instead, so that is not a one size

fits all one I

> > > guess...

> > > Other diet causes could perhaps be low blood sugar or carnitine

> deficiency.

> > > Calorie wise, if she is continuing to lose weight down below

her 'ideal'

> > > weight for height, then perhaps she may need an increase. The

depakote

> > may

> > > have been slowing her metabolism, and now it has had a

kickstart

> > impacting

> > > enough to need more cals - glucose levels could maybe help you

there. If

> > > very low she would prob be lethargic, do you test these at home?

> > >

> > >

> > >

> > >

> > > ----- Original Message -----

> > > From: " "

> > >

> > > > My daughter's been on the ketogenic diet for over a month. In

the

> > > beginning,

> > > > we couldn't get her to have consistant ketones, and she was

sleeping all

> > > the

> > > > time. She was still having seizures, and we went up from a

3:1 ratio to a

> > > > 3.5:1 ratio, with still no changes. After reading some posts

about

> > > Depakote

> > > > interfering with the diet, we started a new med and started

weaning the

> > > > Depakote. Her ketones, almost magically became higher, she

had tons

> of

> > > > energy and her seizures stopped the very next day (she's been

seizure

> > free

> > > > 14 days, don't know if it's the high ketones or the new med,

though.)

> > > >

> > > > She's lost over a pound since she started the diet, and

continues to lose

> > > a

> > > > couple of ounces a week. Now, her ketones are ALWAYS in the

large

> > range,

> > > > and in the last few days she's been sleeping a lot again.

> > > >

> > > > Her Depakote is now down to 100mg per day (it was a whopping

500mg

> > per

> > > > day before we weaned). Do you think the sleepiness could be

caused

> by

> > too

> > > > high a ratio? Maybe she needs more calories?

> > > >

> > > > Thanks for any insight you can give me!

> > > >

> > > > (Mom to Daphne -- 9 months old, dx with infantile

spasms at 3

> > > months)

[Guest guest]

Hi, Ann. The day after we started Vigabatrin, Daphne became 100% seizure

free, and she hasn't had a seizure since (it's been 15 days, *knock on wood*!).

As I mentioned in a previous post, she also got high ketones at the same time,

since we went down on the Depakote, so it's hard to say if it's the medicine,

the diet, or maybe a combination of both. We haven't noticed any side affects

from the Vigabatrin, yet.

We were hesitant to try it at first, too, for the same reason as you; however it

may help to know that the loss of peripheral vision that's been shown in adults

has not been proven to occur in children. In fact, many neurologists believe

that it doesn't happen in young children.

If you haven't already found it, you may want to check out the infantile spasms

board on Yahoo (http://health.groups.yahoo.com/group/infantilespasms/).

There are lots of kids who've had really great success with Vigabatrin, and

their parents can tell you all about any side affects experienced. From what

I've read, parents most commonly say they noticed an increase in tone once

the Vigabatrin was weaned.

Good luck!

So far, we haven't noticed any side affects.

> > > > What is the new med ? Is it one that is likely to cause

> sedation,

> > > > either as she gets more used ot it, or as a permanent side

> effect? If so,

> > > > maybe it is a tad high?

> > > > Or poss withdrawal related from the depakote wean?

> > > > Excess keotsis can cause sleepiness but to be honest we often

> have

> > found

> > > the

> > > > opp here - hyper behaviour instead, so that is not a one size

> fits all one I

> > > > guess...

> > > > Other diet causes could perhaps be low blood sugar or carnitine

> > deficiency.

> > > > Calorie wise, if she is continuing to lose weight down below

> her 'ideal'

> > > > weight for height, then perhaps she may need an increase. The

> depakote

> > > may

> > > > have been slowing her metabolism, and now it has had a

> kickstart

> > > impacting

> > > > enough to need more cals - glucose levels could maybe help you

> there. If

> > > > very low she would prob be lethargic, do you test these at home?

> > > >

> > > >

> > > >

> > > >

> > > > ----- Original Message -----

> > > > From: " "

> > > >

> > > > > My daughter's been on the ketogenic diet for over a month. In

> the

> > > > beginning,

> > > > > we couldn't get her to have consistant ketones, and she was

> sleeping all

> > > > the

> > > > > time. She was still having seizures, and we went up from a

> 3:1 ratio to a

> > > > > 3.5:1 ratio, with still no changes. After reading some posts

> about

> > > > Depakote

> > > > > interfering with the diet, we started a new med and started

> weaning the

> > > > > Depakote. Her ketones, almost magically became higher, she

> had tons

> > of

> > > > > energy and her seizures stopped the very next day (she's been

> seizure

> > > free

> > > > > 14 days, don't know if it's the high ketones or the new med,

> though.)

> > > > >

> > > > > She's lost over a pound since she started the diet, and

> continues to lose

> > > > a

> > > > > couple of ounces a week. Now, her ketones are ALWAYS in the

> large

> > > range,

> > > > > and in the last few days she's been sleeping a lot again.

> > > > >

> > > > > Her Depakote is now down to 100mg per day (it was a whopping

> 500mg

> > > per

> > > > > day before we weaned). Do you think the sleepiness could be

> caused

> > by

> > > too

> > > > > high a ratio? Maybe she needs more calories?

> > > > >

> > > > > Thanks for any insight you can give me!

> > > > >

> > > > > (Mom to Daphne -- 9 months old, dx with infantile

> spasms at 3

> > > > months)

[Guest guest]

,

Thank you so much for your reply. We have asked doctors and nurses

lots of questions, but talking to a parent is so much more

believeable! I am so glad it is working for Daphne. I will check out

that web site. Thanks again for all the great information.

Ann

> > > > > What is the new med ? Is it one that is likely to

cause

> > sedation,

> > > > > either as she gets more used ot it, or as a permanent side

> > effect? If so,

> > > > > maybe it is a tad high?

> > > > > Or poss withdrawal related from the depakote wean?

> > > > > Excess keotsis can cause sleepiness but to be honest we

often

> > have

> > > found

> > > > the

> > > > > opp here - hyper behaviour instead, so that is not a one

size

> > fits all one I

> > > > > guess...

> > > > > Other diet causes could perhaps be low blood sugar or

carnitine

> > > deficiency.

> > > > > Calorie wise, if she is continuing to lose weight down

below

> > her 'ideal'

> > > > > weight for height, then perhaps she may need an increase.

The

> > depakote

> > > > may

> > > > > have been slowing her metabolism, and now it has had a

> > kickstart

> > > > impacting

> > > > > enough to need more cals - glucose levels could maybe help

you

> > there. If

> > > > > very low she would prob be lethargic, do you test these at

home?

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ----- Original Message -----

> > > > > From: " "

> > > > >

> > > > > > My daughter's been on the ketogenic diet for over a

month. In

> > the

> > > > > beginning,

> > > > > > we couldn't get her to have consistant ketones, and she

was

> > sleeping all

> > > > > the

> > > > > > time. She was still having seizures, and we went up from

a

> > 3:1 ratio to a

> > > > > > 3.5:1 ratio, with still no changes. After reading some

posts

> > about

> > > > > Depakote

> > > > > > interfering with the diet, we started a new med and

started

> > weaning the

> > > > > > Depakote. Her ketones, almost magically became higher,

she

> > had tons

> > > of

> > > > > > energy and her seizures stopped the very next day (she's

been

> > seizure

> > > > free

> > > > > > 14 days, don't know if it's the high ketones or the new

med,

> > though.)

> > > > > >

> > > > > > She's lost over a pound since she started the diet, and

> > continues to lose

> > > > > a

> > > > > > couple of ounces a week. Now, her ketones are ALWAYS in

the

> > large

> > > > range,

> > > > > > and in the last few days she's been sleeping a lot again.

> > > > > >

> > > > > > Her Depakote is now down to 100mg per day (it was a

whopping

> > 500mg

> > > > per

> > > > > > day before we weaned). Do you think the sleepiness could

be

> > caused

> > > by

> > > > too

> > > > > > high a ratio? Maybe she needs more calories?

> > > > > >

> > > > > > Thanks for any insight you can give me!

> > > > > >

> > > > > > (Mom to Daphne -- 9 months old, dx with infantile

> > spasms at 3

> > > > > months)

[Guest guest]

,

Thank you so much for your reply. We have asked doctors and nurses

lots of questions, but talking to a parent is so much more

believeable! I am so glad it is working for Daphne. I will check out

that web site. Thanks again for all the great information.

Ann

> > > > > What is the new med ? Is it one that is likely to

cause

> > sedation,

> > > > > either as she gets more used ot it, or as a permanent side

> > effect? If so,

> > > > > maybe it is a tad high?

> > > > > Or poss withdrawal related from the depakote wean?

> > > > > Excess keotsis can cause sleepiness but to be honest we

often

> > have

> > > found

> > > > the

> > > > > opp here - hyper behaviour instead, so that is not a one

size

> > fits all one I

> > > > > guess...

> > > > > Other diet causes could perhaps be low blood sugar or

carnitine

> > > deficiency.

> > > > > Calorie wise, if she is continuing to lose weight down

below

> > her 'ideal'

> > > > > weight for height, then perhaps she may need an increase.

The

> > depakote

> > > > may

> > > > > have been slowing her metabolism, and now it has had a

> > kickstart

> > > > impacting

> > > > > enough to need more cals - glucose levels could maybe help

you

> > there. If

> > > > > very low she would prob be lethargic, do you test these at

home?

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ----- Original Message -----

> > > > > From: " "

> > > > >

> > > > > > My daughter's been on the ketogenic diet for over a

month. In

> > the

> > > > > beginning,

> > > > > > we couldn't get her to have consistant ketones, and she

was

> > sleeping all

> > > > > the

> > > > > > time. She was still having seizures, and we went up from

a

> > 3:1 ratio to a

> > > > > > 3.5:1 ratio, with still no changes. After reading some

posts

> > about

> > > > > Depakote

> > > > > > interfering with the diet, we started a new med and

started

> > weaning the

> > > > > > Depakote. Her ketones, almost magically became higher,

she

> > had tons

> > > of

> > > > > > energy and her seizures stopped the very next day (she's

been

> > seizure

> > > > free

> > > > > > 14 days, don't know if it's the high ketones or the new

med,

> > though.)

> > > > > >

> > > > > > She's lost over a pound since she started the diet, and

> > continues to lose

> > > > > a

> > > > > > couple of ounces a week. Now, her ketones are ALWAYS in

the

> > large

> > > > range,

> > > > > > and in the last few days she's been sleeping a lot again.

> > > > > >

> > > > > > Her Depakote is now down to 100mg per day (it was a

whopping

> > 500mg

> > > > per

> > > > > > day before we weaned). Do you think the sleepiness could

be

> > caused

> > > by

> > > > too

> > > > > > high a ratio? Maybe she needs more calories?

> > > > > >

> > > > > > Thanks for any insight you can give me!

> > > > > >

> > > > > > (Mom to Daphne -- 9 months old, dx with infantile

> > spasms at 3

> > > > > months)

[Guest guest]

,

Thank you so much for your reply. We have asked doctors and nurses

lots of questions, but talking to a parent is so much more

believeable! I am so glad it is working for Daphne. I will check out

that web site. Thanks again for all the great information.

Ann

> > > > > What is the new med ? Is it one that is likely to

cause

> > sedation,

> > > > > either as she gets more used ot it, or as a permanent side

> > effect? If so,

> > > > > maybe it is a tad high?

> > > > > Or poss withdrawal related from the depakote wean?

> > > > > Excess keotsis can cause sleepiness but to be honest we

often

> > have

> > > found

> > > > the

> > > > > opp here - hyper behaviour instead, so that is not a one

size

> > fits all one I

> > > > > guess...

> > > > > Other diet causes could perhaps be low blood sugar or

carnitine

> > > deficiency.

> > > > > Calorie wise, if she is continuing to lose weight down

below

> > her 'ideal'

> > > > > weight for height, then perhaps she may need an increase.

The

> > depakote

> > > > may

> > > > > have been slowing her metabolism, and now it has had a

> > kickstart

> > > > impacting

> > > > > enough to need more cals - glucose levels could maybe help

you

> > there. If

> > > > > very low she would prob be lethargic, do you test these at

home?

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ----- Original Message -----

> > > > > From: " "

> > > > >

> > > > > > My daughter's been on the ketogenic diet for over a

month. In

> > the

> > > > > beginning,

> > > > > > we couldn't get her to have consistant ketones, and she

was

> > sleeping all

> > > > > the

> > > > > > time. She was still having seizures, and we went up from

a

> > 3:1 ratio to a

> > > > > > 3.5:1 ratio, with still no changes. After reading some

posts

> > about

> > > > > Depakote

> > > > > > interfering with the diet, we started a new med and

started

> > weaning the

> > > > > > Depakote. Her ketones, almost magically became higher,

she

> > had tons

> > > of

> > > > > > energy and her seizures stopped the very next day (she's

been

> > seizure

> > > > free

> > > > > > 14 days, don't know if it's the high ketones or the new

med,

> > though.)

> > > > > >

> > > > > > She's lost over a pound since she started the diet, and

> > continues to lose

> > > > > a

> > > > > > couple of ounces a week. Now, her ketones are ALWAYS in

the

> > large

> > > > range,

> > > > > > and in the last few days she's been sleeping a lot again.

> > > > > >

> > > > > > Her Depakote is now down to 100mg per day (it was a

whopping

> > 500mg

> > > > per

> > > > > > day before we weaned). Do you think the sleepiness could

be

> > caused

> > > by

> > > > too

> > > > > > high a ratio? Maybe she needs more calories?

> > > > > >

> > > > > > Thanks for any insight you can give me!

> > > > > >

> > > > > > (Mom to Daphne -- 9 months old, dx with infantile

> > spasms at 3

> > > > > months)