Re: Re: Overly ketotic? Sleepy baby...

[Guest guest]

,

It sounds as though we have a lot in common. Hannah has had so many tests and so

many hospital visits in her little life. In fact, she just had her muscle biopsy

2 weeks ago...still waiting results. When the doctors were pushing towards

metabolic everyone said " thank goodness it isn't mitochondrial. " Now that they

think it is actually mito, they just kind of look at me with sadness. There are

so many things out there, I just know with all of Hannah's issues, she is our

angel, and I would never dream of " trading her in. "

I also have some background with depekote. Such a nasty medicine! Hannah is

currently on keppra and Phenobarbital. She only recently started to spill

ketones and I have yet to see a significant change.

Increasing calories... there is such a fine line here. According to Dr.

Freeman's book (definitely read it if you haven't yet...) they should be at the

50th percentile for there weight and calories should be adjusted accordingly. I

think this is where we have gone wrong with seizure control in Hannah. Due to

the mito/meta issues, she has always been on a modified keto diet, but I didn't

pay too close attention to caloric intake. If she finished her 24 hour formula

supply early, I just made more. Always learning.

Our little ones are so close in age and seem to be going through such similar

things. Please feel free to email me at my personal email as well.

stephanie_shapiro@... I would really like to hear more about your

family and what you are going through. Hannah is our first and I know our road

ahead is long.

Take care and good luck with the sleepy one,

-

---- Original Message -----

From:

To: ketogenic

Sent: Tuesday, August 03, 2004 9:33 PM

Subject: Re: Overly ketotic? Sleepy baby...

,

Thanks! I think caloric intake is probably at least part of the cause, too.

Daphne's nutritionist was hesitant to go up on the calories before, even

though she was losing weight, because of their inconsistancy and the lack of

seizure control. I really feel the depakote was the cause of the

inconsistancy

(if not the lack of seizure control) and now that's out of the picture, she's

probably gone in the other direction and needs more calories.

At least I'm hoping that's what it is. Daphne's had lots of metabolic

testing

(she's had all kinds of blood tests, had two spinal taps and will next be

getting

muscle biopsies to rule some mito disorders out), but I also worry if she has

some sort of undiscovered disorder the diet is making worse. I drive myself

crazy with worry!!!

It was so nice the first week of seizure control and weaning depakote, she

was so energetic, interactive and happy. While I'm thrilled her seizures are

gone, it's very dissappointing that her energy is so low.

--

> Hi ,

> My daughter is 7 months and on the diet. Those nasty infantile seizures! My

guess would be the caloric intake in addition to perhaps a little dehydrated.

The little ones grow so quickly and it is my understanding she should be

maintaining her body weight until she reaches the 50th%ile for her height (not

her age). I weigh and measure Hannah daily at home and then twice a week

she is weighed and measured at the pediatrician's office for more accuracy.

The pediatrician talks to the dietician if there any changes in weight that

could

mean a change in the diet.

> Hope this helps~

>

> Overly ketotic? Sleepy baby...

>

>

> 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)

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto

team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

>

[Guest guest]

,

It sounds as though we have a lot in common. Hannah has had so many tests and so

many hospital visits in her little life. In fact, she just had her muscle biopsy

2 weeks ago...still waiting results. When the doctors were pushing towards

metabolic everyone said " thank goodness it isn't mitochondrial. " Now that they

think it is actually mito, they just kind of look at me with sadness. There are

so many things out there, I just know with all of Hannah's issues, she is our

angel, and I would never dream of " trading her in. "

I also have some background with depekote. Such a nasty medicine! Hannah is

currently on keppra and Phenobarbital. She only recently started to spill

ketones and I have yet to see a significant change.

Increasing calories... there is such a fine line here. According to Dr.

Freeman's book (definitely read it if you haven't yet...) they should be at the

50th percentile for there weight and calories should be adjusted accordingly. I

think this is where we have gone wrong with seizure control in Hannah. Due to

the mito/meta issues, she has always been on a modified keto diet, but I didn't

pay too close attention to caloric intake. If she finished her 24 hour formula

supply early, I just made more. Always learning.

Our little ones are so close in age and seem to be going through such similar

things. Please feel free to email me at my personal email as well.

stephanie_shapiro@... I would really like to hear more about your

family and what you are going through. Hannah is our first and I know our road

ahead is long.

Take care and good luck with the sleepy one,

-

---- Original Message -----

From:

To: ketogenic

Sent: Tuesday, August 03, 2004 9:33 PM

Subject: Re: Overly ketotic? Sleepy baby...

,

Thanks! I think caloric intake is probably at least part of the cause, too.

Daphne's nutritionist was hesitant to go up on the calories before, even

though she was losing weight, because of their inconsistancy and the lack of

seizure control. I really feel the depakote was the cause of the

inconsistancy

(if not the lack of seizure control) and now that's out of the picture, she's

probably gone in the other direction and needs more calories.

At least I'm hoping that's what it is. Daphne's had lots of metabolic

testing

(she's had all kinds of blood tests, had two spinal taps and will next be

getting

muscle biopsies to rule some mito disorders out), but I also worry if she has

some sort of undiscovered disorder the diet is making worse. I drive myself

crazy with worry!!!

It was so nice the first week of seizure control and weaning depakote, she

was so energetic, interactive and happy. While I'm thrilled her seizures are

gone, it's very dissappointing that her energy is so low.

--

> Hi ,

> My daughter is 7 months and on the diet. Those nasty infantile seizures! My

guess would be the caloric intake in addition to perhaps a little dehydrated.

The little ones grow so quickly and it is my understanding she should be

maintaining her body weight until she reaches the 50th%ile for her height (not

her age). I weigh and measure Hannah daily at home and then twice a week

she is weighed and measured at the pediatrician's office for more accuracy.

The pediatrician talks to the dietician if there any changes in weight that

could

mean a change in the diet.

> Hope this helps~

>

> Overly ketotic? Sleepy baby...

>

>

> 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)

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto

team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

>

[Guest guest]

,

It sounds as though we have a lot in common. Hannah has had so many tests and so

many hospital visits in her little life. In fact, she just had her muscle biopsy

2 weeks ago...still waiting results. When the doctors were pushing towards

metabolic everyone said " thank goodness it isn't mitochondrial. " Now that they

think it is actually mito, they just kind of look at me with sadness. There are

so many things out there, I just know with all of Hannah's issues, she is our

angel, and I would never dream of " trading her in. "

I also have some background with depekote. Such a nasty medicine! Hannah is

currently on keppra and Phenobarbital. She only recently started to spill

ketones and I have yet to see a significant change.

Increasing calories... there is such a fine line here. According to Dr.

Freeman's book (definitely read it if you haven't yet...) they should be at the

50th percentile for there weight and calories should be adjusted accordingly. I

think this is where we have gone wrong with seizure control in Hannah. Due to

the mito/meta issues, she has always been on a modified keto diet, but I didn't

pay too close attention to caloric intake. If she finished her 24 hour formula

supply early, I just made more. Always learning.

Our little ones are so close in age and seem to be going through such similar

things. Please feel free to email me at my personal email as well.

stephanie_shapiro@... I would really like to hear more about your

family and what you are going through. Hannah is our first and I know our road

ahead is long.

Take care and good luck with the sleepy one,

-

---- Original Message -----

From:

To: ketogenic

Sent: Tuesday, August 03, 2004 9:33 PM

Subject: Re: Overly ketotic? Sleepy baby...

,

Thanks! I think caloric intake is probably at least part of the cause, too.

Daphne's nutritionist was hesitant to go up on the calories before, even

though she was losing weight, because of their inconsistancy and the lack of

seizure control. I really feel the depakote was the cause of the

inconsistancy

(if not the lack of seizure control) and now that's out of the picture, she's

probably gone in the other direction and needs more calories.

At least I'm hoping that's what it is. Daphne's had lots of metabolic

testing

(she's had all kinds of blood tests, had two spinal taps and will next be

getting

muscle biopsies to rule some mito disorders out), but I also worry if she has

some sort of undiscovered disorder the diet is making worse. I drive myself

crazy with worry!!!

It was so nice the first week of seizure control and weaning depakote, she

was so energetic, interactive and happy. While I'm thrilled her seizures are

gone, it's very dissappointing that her energy is so low.

--

> Hi ,

> My daughter is 7 months and on the diet. Those nasty infantile seizures! My

guess would be the caloric intake in addition to perhaps a little dehydrated.

The little ones grow so quickly and it is my understanding she should be

maintaining her body weight until she reaches the 50th%ile for her height (not

her age). I weigh and measure Hannah daily at home and then twice a week

she is weighed and measured at the pediatrician's office for more accuracy.

The pediatrician talks to the dietician if there any changes in weight that

could

mean a change in the diet.

> Hope this helps~

>

> Overly ketotic? Sleepy baby...

>

>

> 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)

>

>

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto

team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

>

[Guest guest]

Yes, even though you have lowered the depakote by a lot, it is still a 3 med

cocktail with the diet on top of it all. 2, especially 3, even low dose meds

on board can be as potent or toxic in combination as one very high dose med

on it's own.

So that might def be the sleepiness problem, but I guess as long as she is

not having toxicity induced seizures, you can work with that slowly and

hopefully it will improve if you can get the dep and phenobarb gone. Or she

may get used to the vigabatrin and any sleepiness that might be from having

a new med on board might abate over time on it's own.

Or, the glucose readings might give you an idea as to whether it is a

calorie insuffuciency /energy problem. If they are on too few cals,

initially the glucose will be low, and ketones high as they burn thru body

fat to compensate.

It is only after a prolonged period of calorie insufficincy that the the

muscle burning process can kick in (catabolism) which is where ended

up

Anyways - the seizure freedom is the toughie to achieve, so you are heading

in the right direction at least

----- Original Message -----

> Just occured to me as I was reading through my own post, that perhaps it's

the

> combination of Daphne basically being on four antiepileptic regimens:

> Vigabatrin, Depakote, Phenobarb, and the diet. Even though we're weaning

> the Depakote, and cut back her phenobarb, perhaps the combined effect is

> just too much. Urg! I can't wait to get her off some meds!

>

>

>

>

> > The new medicine is Vigabatrin, and she's only on a starting dose at

300mg

> > per day, which is pretty low for the drug. I suppose it could be

causing

> > sleepiness. The other med she's still on is Phenobarbital, which can

> > definitely make one sleepy, but we've cut that dose in half, too.

> >

> > She takes carnitore daily, so I don't think it's that, either. The

glucose level

> is

> > a definite possibility, though. We don't have the equipment to check

that at

> > home. She is definitely losing weight, she is less than the fifth

percentile

> right

> > now (although she's also slightly under in height), and looks a bit

scrawny to

> > me. I remember it fell pretty low in the hospital when she was

starting the

> > diet, but it rose to an OK level before we headed home. I'll

definitely ask

> her

> > pediatrician about this when I see her on Thursday.

> >

> > Thanks,

> >