Re: Re: low ketones and seizures!/Withney

[Guest guest]

Withney,

Thanks for the mail, I'm reading my late mails and I found that one, I hope it

is stabilized for on the diet and you have more ups than downs!

Here at the moment it is very very down, aël is seizuring a lot, we had a

so good day 2 days ago and now it is just so hard to see him like that and

plus, I have a lot of problems with his dadd who doesn't want to understand the

situation!!!

I'm very tired!

Take care

Carolyn, aël's mum 6, on the keto diet 1 1/2 month ago

Re: low ketones and seizures!

Carolyn,

I'm new to the site, but have been reading your posts for the past few week=

s. I am so

worried for you and your son. I think about him a lot! I know how hard all =

the

uncertainty is and I know it gets even harder when you're trying to sort ou=

t the diet.

My son had a very hard time keeping his ketones up in the morning - I know =

the

doctors say this is normal, but it was very frustrating for me. An early bl=

ood test

showed he had a carnitine deficiency - he didn't have this problem before t=

he diet.

From what I understand, carnitine helps the body metabolize fats [and there=

by

increase ketones]. Most people get plenty of carnitine by eating proteins, =

but our kids

get way more fat then protein and sometimes their bodies can't keep up. If =

your son

is on Depakote, the problem is usually exacerbated. I don't think it's help=

ed greatly

with seizure control [we've had about 75% reduction overall and we've been =

on the

diet about 6 weeks with plenty of ups and downs], but his ketones are now a=

lways

high in the morning and he's more vibrant. It may be worth a try... =

takes one

Carnitor tablet with his last snack before bed.

Also - trust yourself!!! No one knows your child as well as you do. Take a =

break [if at

all possible], get some rest, and then do what you think is right. We are l=

ucky enough

to have some of the best doctors working with , but often my gut [ag=

ainst

recommendation] has told me to try something and it's worked. I don't know =

if that

means lowering ael's meds, raising his meds, lowering the diet, raisi=

ng the

diet, going to the hospital or staying home. I know I've grasped at straws =

in times of

desperation - but try not to - think it through and follow your heart. I ho=

pe your son

stabilizes soon - he'll be in my thoughts.

Whitney, 's mom

>

> Hello,

>

> aël is having very bad time seizures every 20 or 40 mn ,I've jus=

t check his

blood ketones and he's 1.1 mmol!!!!

> How can I do to increase the level?

> thanks

> Carolyn, Nath's mum

>

>

>

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