Re: Satnam

[Guest guest]

Hmmmm...Not Children's in DC right? Are you happy with your team? I'm

learning that some hospitals although going the Ketogenic diet don't have the

same training as those that are recommended by Hopkins. I know some times it is

near impossible to get to one of the recommend centers, but I really feel that

Hopkins (especially) and its recommended hospitals seem to have a hand up.

I have read other post's about parents dealing with increased seizures whenever

it gets really nasty hot outside. Of coarse most Neuro teams would say we were

all crazy for thinking such, but no one can tell me to believe a doctor over a

mom or dad for that matter. Maybe Satnam it is the heat and the extra calories,

maybe it just too much change at once. I know my little Ethan used to react to

the smallest of changes; we had to be ever so careful. For example if we didn't

burp him after his feeding, he would have a seizure. It was the strangest

thing, but I saw what I saw and it just happened to many time for me not to

believe it. Anyways hang in there; I think you can figure it out. If you can,

try to keep a positive attitude, (I know it can be hard) but I really think it

helps.

shelly

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

The weather is really hot here now, they are predicting major hot

weather for the next three days and saying to be careful of heat

stroke. I think the heat may have something to do with it. Kristan

has put on some weight and we have increased calories and she does

look taller, people say she does. Her height is measured at

Children's Hospital and we go every 3 months as it is out of town for

us.

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

> > >

> > >

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

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> ------

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

> > >

> > >

> > >

> > >

[Guest guest]

Sorry Satnam. I just got to this mail. We have been having long holidays

from 11/11 up to 16/11 because of the festive season for the Malays and

Indians. I usually read my mails in order of LIFO (last in first out), just

in case when I am at work and an important note comes by. I hope Kristan is

doing better now. just had a G tube placed on 28th Oct in Singapore.

We got tired of waiting over here so I drove down to Singapore and we had

it done almost immediately. Also, the surgeon here wanted to do an open

surgery and Singapore did it laproscopically. Thankfully, we did the latter

and he recovered pretty fast. I am actually leaving this afternoon again

for a check-up and also to see Sutton who will be in Singapore.

's seizures came back, but in a different way, not the IS kind. So I

hope cell salts will minimise his former combo of anti-epileptic drugs.

" kristansmomm

y " To: ketogenic

Subject: Re: to

12/11/2004

07:29 AM

Please

respond to

ketogenic

Hi , the pediatrician said Kristan seems fine and agreed she

is teething, no ear infection. She still threw up yesterday though

and is not taking any fluids today, but I will keep trying.

How is your little guy doing?

Satnam, mom to Kristan, 23 months

Keto kid since August 2003 and currently weaning from the diet

nks

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