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, do you live in Indy? I live in NW Indiana. We go to Children's in

Chicago- they have an awesome Epilepsy Center and keto team and is there any way

you can make it there? Check and see if your insurance covers? 1-800-KIDS-DOC. I

haven't heard the best about Riley's in the neuro dept- it might be worth

checking Children's out... you should be able to call your neuro and keto team

and get these answers from them WITHOUT SOUNDING LIKE AN IDIOT. You are not an

idiot- you are your child's ony advocate. But, Noah did have grand mals and he

is on no meds (was previously on Keppra) and is on the keto diet and is doing

fine, so I guess yes, the diet can control the gm's as long as the diet is being

done correctly. Don't wait until your next appointments to address your q's to

the doctor. You should be able to call them anytime.

Steph

Mom to Noah- age 3, med-free, & seizure-free on keto

nicolemc1120@...> wrote:

Ok, yes he is on phenobarb, zarontin, and keppra. I have two

questions one is does the diet help grand mals. My sons keppra is

what controls his gms and since it's a secodary drug, Ineed the

phenobarb or zarontin. But I am not sure if keto stops gms. Then if

ketosis is too high or he needs more fluids would I know from blood

sugar he ranges from 58-68. Whichis said to be ok on keto. Oh yeah

one more thing what is specific grsvity, and how do I tell with the

urine? I am sorry I am trying to be informed. I go to riley hospital

in indiana which is 3 hrs from my home, we have to go get hisd g-

tube fixed, the valve is broken, tommorrow, I was going to stop by

the nuero and ask about meds but I do't want to sound like an idiot.

" 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

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actually no, I do not live in indy, i live in south bend, but

childrens won't take my insurance. I have already tried. I love my

nuero, he is great, epi is another story but we are trying to get

along,my dietician is fabulous. I left a message with both so should

hear back soon. I just figured if I didn't I oculd dtop by tommorrow

b/c his GI is down there also. Thanks though.

>

> Ok, yes he is on phenobarb, zarontin, and keppra. I have two

> questions one is does the diet help grand mals. My sons keppra is

> what controls his gms and since it's a secodary drug, Ineed the

> phenobarb or zarontin. But I am not sure if keto stops gms. Then

if

> ketosis is too high or he needs more fluids would I know from

blood

> sugar he ranges from 58-68. Whichis said to be ok on keto. Oh yeah

> one more thing what is specific grsvity, and how do I tell with

the

> urine? I am sorry I am trying to be informed. I go to riley

hospital

> in indiana which is 3 hrs from my home, we have to go get hisd g-

> tube fixed, the valve is broken, tommorrow, I was going to stop by

> the nuero and ask about meds but I do't want to sound like an

idiot.

>

>

>

>

>

>

> " 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

>

>

>

>

>

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Share on other sites

Hi Barb

How is Jake

I think of you often

I have been too busy to e-mail--but always read my mail

Plus-we have had to evacuate too many times because of the hurricanes

Not sure if you remember Zara

Sghe is still on the diet--but are trying to do a Ket/Atkins

Atkins did not control her seizures--she needs more of a controlled diet and

increased fat--

Her last 2 EEG's have not been great--they showed " irritability " and spiking &

sharp waves --but only with phobic stimulation & hyper ventilation & sleep

deprivation

Yet she has never had this before--hopefully it is because of age & hormones

She is doing better academically and in every day activities-so we are

continuing the diet and accepting the small seizures

She has done so much better since starting the diet--almost no grand mals

Best to you

Sandi

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The keto diet did wonders for my sons grand mals. They were reduced in

frequencey and severity. In our case, the Keppra controls the drops but not

the grand mals. Every child reacts differently to every med and the diet -

you are not an idiot. Just a concerned mom trying to educate herself. Give

yourself credit.

Barb Swoyer, Jake's mom

Re: need help still-

>

> , do you live in Indy? I live in NW Indiana. We go to Children's in

Chicago- they have an awesome Epilepsy Center and keto team and is there any

way you can make it there? Check and see if your insurance covers?

1-800-KIDS-DOC. I haven't heard the best about Riley's in the neuro dept- it

might be worth checking Children's out... you should be able to call your

neuro and keto team and get these answers from them WITHOUT SOUNDING LIKE AN

IDIOT. You are not an idiot- you are your child's ony advocate. But, Noah

did have grand mals and he is on no meds (was previously on Keppra) and is

on the keto diet and is doing fine, so I guess yes, the diet can control the

gm's as long as the diet is being done correctly. Don't wait until your next

appointments to address your q's to the doctor. You should be able to call

them anytime.

>

> Steph

> Mom to Noah- age 3, med-free, & seizure-free on keto

>

> nicolemc1120@...> wrote:

>

> Ok, yes he is on phenobarb, zarontin, and keppra. I have two

> questions one is does the diet help grand mals. My sons keppra is

> what controls his gms and since it's a secodary drug, Ineed the

> phenobarb or zarontin. But I am not sure if keto stops gms. Then if

> ketosis is too high or he needs more fluids would I know from blood

> sugar he ranges from 58-68. Whichis said to be ok on keto. Oh yeah

> one more thing what is specific grsvity, and how do I tell with the

> urine? I am sorry I am trying to be informed. I go to riley hospital

> in indiana which is 3 hrs from my home, we have to go get hisd g-

> tube fixed, the valve is broken, tommorrow, I was going to stop by

> the nuero and ask about meds but I do't want to sound like an idiot.

>

>

>

>

>

>

> " 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

>

>

>

>

>

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