Re: Re: Satnam & carolyn : low ketones and seizures!

[Guest guest]

I'm not sure how quick it can work, but after all some see changes the 1st few

days the diet is started, so it doesn't seem out of the realm of possibility's.

I noticed Kristan did real well in May and some of June, just wondering, has the

whether changed much there since then, or did you have a growth sprit, weight

gain?

shelly

Re: Satnam & carolyn : low ketones and seizures!

Thanks . Kristan seems to be doing a bit better today. I had

a long talk with the keto nurse yesterday and now as a last desperate

attempt to raise ketones we have started the Carnitor. If this

doesn't work, then we may have to think about stopping the diet and

maybe try a drug, but I am so afraid to try any drugs again. I

always get my hopes up and yesterday her ketones were between 8-16

immediately and almost at 8 today, can it work that fast?

Thanks again,

Satnam

> >

> > Hello,

> >

> > aël is having very bad time seizures every 20 or 40

> mn ,I've just check his blood ketones and he's 1.1 mmol!!!!

> > How can I do to increase the level?

> > thanks

> > Carolyn, Nath's mum

> >

> >

> > --------------------------------------------------------------

------

> ------------

> >

> >

> >

> >

[Guest guest]

I'm not sure how quick it can work, but after all some see changes the 1st few

days the diet is started, so it doesn't seem out of the realm of possibility's.

I noticed Kristan did real well in May and some of June, just wondering, has the

whether changed much there since then, or did you have a growth sprit, weight

gain?

shelly

Re: Satnam & carolyn : low ketones and seizures!

Thanks . Kristan seems to be doing a bit better today. I had

a long talk with the keto nurse yesterday and now as a last desperate

attempt to raise ketones we have started the Carnitor. If this

doesn't work, then we may have to think about stopping the diet and

maybe try a drug, but I am so afraid to try any drugs again. I

always get my hopes up and yesterday her ketones were between 8-16

immediately and almost at 8 today, can it work that fast?

Thanks again,

Satnam

> >

> > Hello,

> >

> > aël is having very bad time seizures every 20 or 40

> mn ,I've just check his blood ketones and he's 1.1 mmol!!!!

> > How can I do to increase the level?

> > thanks

> > Carolyn, Nath's mum

> >

> >

> > --------------------------------------------------------------

------

> ------------

> >

> >

> >

> >

[Guest guest]

I'm not sure how quick it can work, but after all some see changes the 1st few

days the diet is started, so it doesn't seem out of the realm of possibility's.

I noticed Kristan did real well in May and some of June, just wondering, has the

whether changed much there since then, or did you have a growth sprit, weight

gain?

shelly

Re: Satnam & carolyn : low ketones and seizures!

Thanks . Kristan seems to be doing a bit better today. I had

a long talk with the keto nurse yesterday and now as a last desperate

attempt to raise ketones we have started the Carnitor. If this

doesn't work, then we may have to think about stopping the diet and

maybe try a drug, but I am so afraid to try any drugs again. I

always get my hopes up and yesterday her ketones were between 8-16

immediately and almost at 8 today, can it work that fast?

Thanks again,

Satnam

> >

> > Hello,

> >

> > aël is having very bad time seizures every 20 or 40

> mn ,I've just check his blood ketones and he's 1.1 mmol!!!!

> > How can I do to increase the level?

> > thanks

> > Carolyn, Nath's mum

> >

> >

> > --------------------------------------------------------------

------

> ------------

> >

> >

> >

> >

[Guest guest]

Hello,

We spent an horrible night back home! aël has had 21 tonico clonic

seizures, I'm completely lost and alone!

At hospital they don't believe in the diet so they don't check anything!Just

once ketones in the urines that's all!

I've checked this morning with blood monitor and Nath is only 1.4 so I know

why the diet doesn't work...but I don't what to do, I'm waiting for the coconut

oil and I'll try these...

In France flax oil is illegal yes, everything is!Even Stevia...

I'll try to keep courage and give to Nath a better diet than at hospital

because it's really nonsense, no calculations!

I'm very worried and I'm sure they don't care about Nath because he's not a

child like others ones, he's multi disabled and they know he won't speak or walk

so they don't mind about him! I really feel like that and it's not the first

time!

I'm extremely sad and angry.

Thank for beeing here

Carolyn, aël's mum 6

---- Original Message -----

From: wendymmw

To: ketogenic

Sent: Sunday, July 25, 2004 1:51 AM

Subject: Re: Satnam & carolyn : low ketones and seizures!

Hi Carolyn

I know you'll be glad to be home. I hope Nath's OK.

I posted the coconut oil on Wednesday, so you should get it soon, if

it hasn't arrived already.

I've spoken to a few people who are surprised about flax oil being

illegal in France. Is it definitely flax not hemp??? And the oil

not the seeds???

There is a company in the UK, who are the main European distributors

for Kirkman Laboratories, who do the magnesium citrate powder which I

use for constipation and they will deliver to France. They do many,

many useful things for the ketogenic diet. Their web address is

www.nutricentre.com. I'm not desperately impressed with their

website, but they are are excellent on the phone if you want to speak

to a nutritionist.

Look after yourself and keep us posted on how Nath's doing...

, Mum to Francesca, Keto Kid since Sept 03, drug free since May

04

> Hello,

>

> aël is back home but he's still got seizures.

> I'm reading mails and I'll write more later.

> Nath is under Trileptal, Rivotril

> Doctors don't know about keto diet !!!!it's amazing!!!They said

it doen't need to be contrled with keto sticks urinary ant not at all

blood control!!!!!!!!!!!!!!!!!!!!!

> We're back home but i'm scared of the future even just of

tomorrow...

>

> Carolyn, aël's mum

" 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]

Hello,

We spent an horrible night back home! aël has had 21 tonico clonic

seizures, I'm completely lost and alone!

At hospital they don't believe in the diet so they don't check anything!Just

once ketones in the urines that's all!

I've checked this morning with blood monitor and Nath is only 1.4 so I know

why the diet doesn't work...but I don't what to do, I'm waiting for the coconut

oil and I'll try these...

In France flax oil is illegal yes, everything is!Even Stevia...

I'll try to keep courage and give to Nath a better diet than at hospital

because it's really nonsense, no calculations!

I'm very worried and I'm sure they don't care about Nath because he's not a

child like others ones, he's multi disabled and they know he won't speak or walk

so they don't mind about him! I really feel like that and it's not the first

time!

I'm extremely sad and angry.

Thank for beeing here

Carolyn, aël's mum 6

---- Original Message -----

From: wendymmw

To: ketogenic

Sent: Sunday, July 25, 2004 1:51 AM

Subject: Re: Satnam & carolyn : low ketones and seizures!

Hi Carolyn

I know you'll be glad to be home. I hope Nath's OK.

I posted the coconut oil on Wednesday, so you should get it soon, if

it hasn't arrived already.

I've spoken to a few people who are surprised about flax oil being

illegal in France. Is it definitely flax not hemp??? And the oil

not the seeds???

There is a company in the UK, who are the main European distributors

for Kirkman Laboratories, who do the magnesium citrate powder which I

use for constipation and they will deliver to France. They do many,

many useful things for the ketogenic diet. Their web address is

www.nutricentre.com. I'm not desperately impressed with their

website, but they are are excellent on the phone if you want to speak

to a nutritionist.

Look after yourself and keep us posted on how Nath's doing...

, Mum to Francesca, Keto Kid since Sept 03, drug free since May

04

> Hello,

>

> aël is back home but he's still got seizures.

> I'm reading mails and I'll write more later.

> Nath is under Trileptal, Rivotril

> Doctors don't know about keto diet !!!!it's amazing!!!They said

it doen't need to be contrled with keto sticks urinary ant not at all

blood control!!!!!!!!!!!!!!!!!!!!!

> We're back home but i'm scared of the future even just of

tomorrow...

>

> Carolyn, aël's mum

" 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]

Hello,

We spent an horrible night back home! aël has had 21 tonico clonic

seizures, I'm completely lost and alone!

At hospital they don't believe in the diet so they don't check anything!Just

once ketones in the urines that's all!

I've checked this morning with blood monitor and Nath is only 1.4 so I know

why the diet doesn't work...but I don't what to do, I'm waiting for the coconut

oil and I'll try these...

In France flax oil is illegal yes, everything is!Even Stevia...

I'll try to keep courage and give to Nath a better diet than at hospital

because it's really nonsense, no calculations!

I'm very worried and I'm sure they don't care about Nath because he's not a

child like others ones, he's multi disabled and they know he won't speak or walk

so they don't mind about him! I really feel like that and it's not the first

time!

I'm extremely sad and angry.

Thank for beeing here

Carolyn, aël's mum 6

---- Original Message -----

From: wendymmw

To: ketogenic

Sent: Sunday, July 25, 2004 1:51 AM

Subject: Re: Satnam & carolyn : low ketones and seizures!

Hi Carolyn

I know you'll be glad to be home. I hope Nath's OK.

I posted the coconut oil on Wednesday, so you should get it soon, if

it hasn't arrived already.

I've spoken to a few people who are surprised about flax oil being

illegal in France. Is it definitely flax not hemp??? And the oil

not the seeds???

There is a company in the UK, who are the main European distributors

for Kirkman Laboratories, who do the magnesium citrate powder which I

use for constipation and they will deliver to France. They do many,

many useful things for the ketogenic diet. Their web address is

www.nutricentre.com. I'm not desperately impressed with their

website, but they are are excellent on the phone if you want to speak

to a nutritionist.

Look after yourself and keep us posted on how Nath's doing...

, Mum to Francesca, Keto Kid since Sept 03, drug free since May

04

> Hello,

>

> aël is back home but he's still got seizures.

> I'm reading mails and I'll write more later.

> Nath is under Trileptal, Rivotril

> Doctors don't know about keto diet !!!!it's amazing!!!They said

it doen't need to be contrled with keto sticks urinary ant not at all

blood control!!!!!!!!!!!!!!!!!!!!!

> We're back home but i'm scared of the future even just of

tomorrow...

>

> Carolyn, aël's mum

" 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]

Carolyn

In the UK flax is called linseed, and I telephoned my friend in france

and you should be able to purchase it no problem. I think you have it

mistaken for hemp??? You can order it online if need be too.

The other thing is to get your Dr. to prescribe MCT oil and give him

some of that. We started Stella with 5g calculated into each meal (we

would mix it with her whipped cream as it is tasteless and then freeze)

but now we are giving her 8g per meal to try and get her

betahydroxibuterate levels higher. We also give her flax oil on her

salads, so she's getting a lot of natural mct oil in her too.

We are weaning Stella off her diazepam and then the diamox to see what

happens with just one medicine and the diet. My goal is to get her off

all meds.

The other option which are thinking seriously about now is having the

VNS implant put in soon. I'm not giving up on the diet, but the meds

don't work so we are looking for other options. Does France offer the

VNS?

Your poor son needs serious medical attention soon, can you go to

England or come over here to see another consultant? You really need

some support, I'll ring the epilepsy foundation over here on Monday and

talk to someone about trying to get you help. It seems ridiculous that

there is not someplace close to you that offer some other suggestions.

amanda-mom to stella, 5 1/2 years old, started keto diet May 10th 2004

still waiting for it to work. Weaning off the diazepam, thinking of

VNS.

>   Hello,

>

>   We spent an horrible night back home! aël has had  21 tonico

> clonic seizures, I'm completely  lost and alone!

>   At hospital they don't believe in the diet so they don't check

> anything!Just once  ketones  in the urines that's all!

>   I've checked this morning with blood monitor and Nath is  only 1.4

> so I know why the diet doesn't work...but I don't what to do, I'm

> waiting for the coconut oil and  I'll try these...

>   In France  flax oil is illegal yes, everything is!Even Stevia...

>   I'll try to  keep courage and give to Nath a better diet than at

> hospital because it's really nonsense, no calculations!

>   I'm very worried and I'm sure they don't care about  Nath because

> he's not a child like others ones, he's multi disabled and they know

> he won't speak or walk  so they don't mind about him! I really feel

> like that and it's not the first time!

>   I'm extremely sad and  angry.

>

>   Thank for beeing here

>

>   Carolyn, aël's mum 6

>

>   ---- Original Message -----

>     From: wendymmw

>     To: ketogenic

>     Sent: Sunday, July 25, 2004 1:51 AM

>     Subject: Re: Satnam & carolyn : low ketones and

> seizures!

>

>

>     Hi Carolyn

>

>     I know you'll be glad to be home.  I hope Nath's OK. 

>

>     I posted the coconut oil on Wednesday, so you should get it soon,

> if

>     it hasn't arrived already. 

>

>     I've spoken to a few people who are surprised about flax oil being

>     illegal in France.  Is it definitely flax not hemp???  And the oil

>     not the seeds???

>

>     There is a company in the UK, who are the main European

> distributors

>     for Kirkman Laboratories, who do the magnesium citrate powder

> which I

>     use for constipation and they will deliver to France.  They do

> many,

>     many useful things for the ketogenic diet.  Their web address is

>     www.nutricentre.com.  I'm not desperately impressed with their

>     website, but they are are excellent on the phone if you want to

> speak

>     to a nutritionist.

>

>     Look after yourself and keep us posted on how Nath's doing...

>

>

>     , Mum to Francesca, Keto Kid since Sept 03, drug free since

> May

>     04

>

>

>

>

>    

>     >   Hello,

>     >

>     >   aël is back home but he's still got seizures.

>     >   I'm reading mails and I'll write  more later.

>     >   Nath is under Trileptal, Rivotril

>     >   Doctors don't know about  keto diet !!!!it's amazing!!!They

> said 

>     it doen't need to be contrled with keto sticks urinary ant not at

> all

>     blood control!!!!!!!!!!!!!!!!!!!!!

>     >   We're back home but  i'm scared of the future even just of

>     tomorrow...

>     >

>     >   Carolyn, aël's mum

>

>

>

>

>       " 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]

Carolyn-

I asked where you live, but now know, so please don't reply. We are here for

you; you are right, your hospital doesn't know enough about the diet. We know

how frustrating it can be, just know that there are 100's of us in this support

group and we are all on your side.

, mom to Ethan

Subject: Re: Re: Satnam & carolyn : low ketones and seizures!

Hello,

We spent an horrible night back home! aël has had 21 tonico clonic

seizures, I'm completely lost and alone!

At hospital they don't believe in the diet so they don't check anything!Just

once ketones in the urines that's all!

I've checked this morning with blood monitor and Nath is only 1.4 so I know

why the diet doesn't work...but I don't what to do, I'm waiting for the coconut

oil and I'll try these...

In France flax oil is illegal yes, everything is!Even Stevia...

I'll try to keep courage and give to Nath a better diet than at hospital

because it's really nonsense, no calculations!

I'm very worried and I'm sure they don't care about Nath because he's not a

child like others ones, he's multi disabled and they know he won't speak or walk

so they don't mind about him! I really feel like that and it's not the first

time!

I'm extremely sad and angry.

Thank for beeing here

Carolyn, aël's mum 6

---- Original Message -----

From: wendymmw

To: ketogenic

Sent: Sunday, July 25, 2004 1:51 AM

Subject: Re: Satnam & carolyn : low ketones and seizures!

Hi Carolyn

I know you'll be glad to be home. I hope Nath's OK.

I posted the coconut oil on Wednesday, so you should get it soon, if

it hasn't arrived already.

I've spoken to a few people who are surprised about flax oil being

illegal in France. Is it definitely flax not hemp??? And the oil

not the seeds???

There is a company in the UK, who are the main European distributors

for Kirkman Laboratories, who do the magnesium citrate powder which I

use for constipation and they will deliver to France. They do many,

many useful things for the ketogenic diet. Their web address is

www.nutricentre.com. I'm not desperately impressed with their

website, but they are are excellent on the phone if you want to speak

to a nutritionist.

Look after yourself and keep us posted on how Nath's doing...

, Mum to Francesca, Keto Kid since Sept 03, drug free since May

04

> Hello,

>

> aël is back home but he's still got seizures.

> I'm reading mails and I'll write more later.

> Nath is under Trileptal, Rivotril

> Doctors don't know about keto diet !!!!it's amazing!!!They said

it doen't need to be contrled with keto sticks urinary ant not at all

blood control!!!!!!!!!!!!!!!!!!!!!

> We're back home but i'm scared of the future even just of

tomorrow...

>

> Carolyn, aël's mum

" 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