Question on Carnitor solution 10%

[Guest guest]

My son, is taking Carnitor in the 10% solution form which

contains artificial cherry flavoring and sucrose syrup. I am

allowing for the carbs in his meals per our dietician. Does anyone

know if the sucrose or artificial flavoring could still be

interfering with his seizure control? We have had a very difficult

time controlling his myoclonic seizures on the diet. Thanks for any

help anyone can give!

Ann

[Guest guest]

Hi Ann,

Hannah is on the same thing and we had many debates with her dietician,

nutritionist, geneticist, and neurologist. The fact is, every child is

different. If you are allowing for the carbs in the diet, than you should be ok.

There are also sugars in most lotions, shampoos, sunscreens, etc. Some children

are affected, some are not. Hannah is 8 months and has been on some version of

the diet since birth (there were some metabolic issues that caused the diet so

early on) She just recently started spilling consistent ketones and her seizures

have finally within the past 48 hours shown a significant decrease. Those MC's

are tricky! Some kiddos find relief in this type of seizure first. Hannah's have

pretty much gone away! We are fighting the TC's.

How much carnitor is getting per day? How are his ketones? If he is

spilling pretty consistently, I would again say it is not the carnitor.

, mom to Hannah

Question on Carnitor solution 10%

My son, is taking Carnitor in the 10% solution form which

contains artificial cherry flavoring and sucrose syrup. I am

allowing for the carbs in his meals per our dietician. Does anyone

know if the sucrose or artificial flavoring could still be

interfering with his seizure control? We have had a very difficult

time controlling his myoclonic seizures on the diet. Thanks for any

help anyone can give!

Ann

" 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]

Some of the artificial flavorings contain propene glycol, and our dietician

didn't like to see have too much of it for this reason - can contribute

to neuronal excitability accordng to a lot of sites.

And the sucrose, even when calculated in carb wise can can be a seizure

trigger for some sensitive kiddies, as with a lot of the 'oses' and 'ols', so as

part of finetuning I would try and find an addiditve free one to at least

eliminate the possibility - worth a shot...

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

From: kenai22000

My son, is taking Carnitor in the 10% solution form which

contains artificial cherry flavoring and sucrose syrup. I am

allowing for the carbs in his meals per our dietician. Does anyone

know if the sucrose or artificial flavoring could still be

interfering with his seizure control? We have had a very difficult

time controlling his myoclonic seizures on the diet. Thanks for any

help anyone can give!

Ann

[Guest guest]

Ann,

The carnitor my son used was sweetened with saccherine.

It came in little brown bottles (one per dose of 1gm)

Saro...Rohan's mum

& Hill wrote:

> Some of the artificial flavorings contain propene glycol, and our dietician

didn't like to see have too much of it for this reason - can contribute

to neuronal excitability accordng to a lot of sites.

> And the sucrose, even when calculated in carb wise can can be a seizure

trigger for some sensitive kiddies, as with a lot of the 'oses' and 'ols', so as

part of finetuning I would try and find an addiditve free one to at least

eliminate the possibility - worth a shot...

>

>

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

> From: kenai22000

>

>

> My son, is taking Carnitor in the 10% solution form which

> contains artificial cherry flavoring and sucrose syrup. I am

> allowing for the carbs in his meals per our dietician. Does anyone

> know if the sucrose or artificial flavoring could still be

> interfering with his seizure control? We have had a very difficult

> time controlling his myoclonic seizures on the diet. Thanks for any

> help anyone can give!

>

> Ann

>

>

>

>

>

>

>

>

>

[Guest guest]

Dear Anne

This might not be your case but I would like to bring it out

anyway.Carnitor itself can also exacerbate seizure activity,no

matter which form your son takes(this warning is included in box

with Carnitor tablets).In our SMEI group 2 kids had had very bad

experience with Carnitor ,particulary with myoclonic seizures.In any

case I would switch to tablets form first and if this does not

help,I would stop Carnitor for a few days just to see if it makes

any difference.Carnitine supplementation is nesessary only in rare

cases with kids on keto diet.My son was prescribed Carnitor too ,but

we have never tried it yet.I put it away untill it absolutely

nesessary if at all

Natasha,mm to 2 years old ph, suspected SMEI/Dravet's

syndrome,keto kid since Auguat 23 3004

> My son, is taking Carnitor in the 10% solution form which

> contains artificial cherry flavoring and sucrose syrup. I am

> allowing for the carbs in his meals per our dietician. Does

anyone

> know if the sucrose or artificial flavoring could still be

> interfering with his seizure control? We have had a very

difficult

> time controlling his myoclonic seizures on the diet. Thanks for

any

> help anyone can give!

>

> Ann

[Guest guest]

natashagainford wrote:

> Dear Anne

> This might not be your case but I would like to bring it out

> anyway.Carnitor itself can also exacerbate seizure activity,no

> matter which form your son takes(this warning is included in box

> with Carnitor tablets).In our SMEI group 2 kids had had very bad

> experience with Carnitor ,particulary with myoclonic seizures.

Now isn't that interesting. was one of those who had a terrible

time with Carnitor. Until then she had only ever had one seizure time (

partial complex with generalized so fast it looked like tonic clonic)

but at the end of her hospital stay with the carnitine she started

having myoclonics. Coincidence?? Geuss we will never know

> In any

> case I would switch to tablets form first and if this does not

> help,I would stop Carnitor for a few days just to see if it makes

> any difference.Carnitine supplementation is nesessary only in rare

> cases with kids on keto diet.My son was prescribed Carnitor too ,but

> we have never tried it yet.I put it away untill it absolutely

> nesessary if at all

>

> Natasha,mm to 2 years old ph, suspected SMEI/Dravet's

> syndrome,keto kid since Auguat 23 3004

>

>

> > My son, is taking Carnitor in the 10% solution form which

> > contains artificial cherry flavoring and sucrose syrup. I am

> > allowing for the carbs in his meals per our dietician. Does

> anyone

> > know if the sucrose or artificial flavoring could still be

> > interfering with his seizure control? We have had a very

> difficult

> > time controlling his myoclonic seizures on the diet. Thanks for

> any

> > help anyone can give!

> >

> > Ann

>

>

>

> " 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]

As far as I know sucrose is a no-no on the diet.

Bill

mmc@... wrote:

> natashagainford wrote:

>

>

>> Dear Anne

>>This might not be your case but I would like to bring it out

>>anyway.Carnitor itself can also exacerbate seizure activity,no

>>matter which form your son takes(this warning is included in box

>>with Carnitor tablets).In our SMEI group 2 kids had had very bad

>>experience with Carnitor ,particulary with myoclonic seizures.

>

>

> Now isn't that interesting. was one of those who had a terrible

> time with Carnitor. Until then she had only ever had one seizure time (

> partial complex with generalized so fast it looked like tonic clonic)

> but at the end of her hospital stay with the carnitine she started

> having myoclonics. Coincidence?? Geuss we will never know

>

>

>

>>In any

>>case I would switch to tablets form first and if this does not

>>help,I would stop Carnitor for a few days just to see if it makes

>>any difference.Carnitine supplementation is nesessary only in rare

>>cases with kids on keto diet.My son was prescribed Carnitor too ,but

>>we have never tried it yet.I put it away untill it absolutely

>>nesessary if at all

>>

>>Natasha,mm to 2 years old ph, suspected SMEI/Dravet's

>>syndrome,keto kid since Auguat 23 3004

>>

>>

>>

>>>My son, is taking Carnitor in the 10% solution form which

>>>contains artificial cherry flavoring and sucrose syrup. I am

>>>allowing for the carbs in his meals per our dietician. Does

>>

>>anyone

>>

>>>know if the sucrose or artificial flavoring could still be

>>>interfering with his seizure control? We have had a very

>>

>>difficult

>>

>>>time controlling his myoclonic seizures on the diet. Thanks for

>>

>>any

>>

>>>help anyone can give!

>>>

>>>Ann

>>

>>

>>

>> " 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

>>

>>

>>

>>

>>