Re: Stella's doc apt- 7days seizure free... yippeee

[Guest guest]

,

What have the urine ketones been in the last week?

Platelet count could be associated with the meds she is on. What vitamin

and mineral supplements are you using? That might also be something to

look at.

You might want to wait and see if the reflux medicine is needed or

whether time and using the non-medicine suggestions work to control it.

I guess that after so many years I am anti-medicines.

Congratulations on no seizures!

It might not be a lab mistake. Some children do better at lower ketones.

No one knows how the diet works; remember that.

Bill

and Stansfield-lyons wrote:

> Hi all, Had to write I am just so excited,

> We just got back from Stella's doc apt, I was so happy to announce 7 days

> of no seizures, can you believe it, last week she was having dozens a day.

> The most unusual to report however is her BHB was 1.7, now that is low, it's

> never been that low, is it a lab mistake they are assuming it is as her

> carnatine levels looked good. I have no idea what else it could be. I'm

> just so tickled she's had such a good week.

> School is walking on egg shells though waiting the 1st seizure, but i'm

> feeling this is going to be a good year for her. I hope this is the start

> of a very long stretch for her of being seizure free. Her doc and dietician

> both said she was sooo cute today, such personality full of energy and non

> stop 5 year old chatter. I love it!!!

> Her platelet count is low though so we have to meet with a specialist about

> that, especially if we end up going ahead with the VNS.

> We did have a nasty evening Wednesday she woke up at 11:30pm vomiting, so

> the doc is putting her on a reflux medicine to help her stomach out.

> I know there was some mention on here of some minerals your children are

> taking the cal-mag-zinc I think, where do you get it from, is it different

> from the ones at the health store?

>

>

>

>

>

[Guest guest]

Wow! I am so happy for Stella. How wonderful to begin school on such a happy

note! God bless her! He has! , 's mumma.

and Stansfield-lyons astansfield@...> wrote:Hi all, Had to

write I am just so excited,

We just got back from Stella's doc apt, I was so happy to announce 7 days

of no seizures, can you believe it, last week she was having dozens a day.

The most unusual to report however is her BHB was 1.7, now that is low, it's

never been that low, is it a lab mistake they are assuming it is as her

carnatine levels looked good. I have no idea what else it could be. I'm

just so tickled she's had such a good week.

School is walking on egg shells though waiting the 1st seizure, but i'm

feeling this is going to be a good year for her. I hope this is the start

of a very long stretch for her of being seizure free. Her doc and dietician

both said she was sooo cute today, such personality full of energy and non

stop 5 year old chatter. I love it!!!

Her platelet count is low though so we have to meet with a specialist about

that, especially if we end up going ahead with the VNS.

We did have a nasty evening Wednesday she woke up at 11:30pm vomiting, so

the doc is putting her on a reflux medicine to help her stomach out.

I know there was some mention on here of some minerals your children are

taking the cal-mag-zinc I think, where do you get it from, is it different

from the ones at the health store?

--

-mom to Stella, 5years old, started keto diet May 10th 2004 still

waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa

is almost 10 and a happy healthy girl.

" 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

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[Guest guest]

Okay I spoke to soon, yesterday was my older daughters school picnic and

stella was having so much fun running around, sure enough 15mins later she

dropped into a big TC. Didn't give the diastat though. Major

disappointment, but it gives us hope she'll go another 6 days (can't say 7

now) then 8 etc.

She takes the bugs bunny vitamin/mineral, but we were also told to get the

non sodium salt (can't remember the name now) which will give her extra

potassium. So we'll try that, and not to do the reflux meds yet, but she

always has terrible stomach pains, always pushing in her tummy and asking us

to rub it, that's how she falls asleep at bed time is with tummy rubs. Her

platelet count was low but it was function of the platelets that was

worrying the doc.

I've started giving her colace everyday now as she is so constipated again,

it's always something isn't it.

--

-mom to Stella, 5years old, started keto diet May 10th 2004 still

waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa

is almost 10 and a happy healthy girl.

[Guest guest]

and Stansfield-lyons wrote:

> Okay I spoke to soon, yesterday was my older daughters school picnic

> and

> stella was having so much fun running around, sure enough 15mins later

> she

> dropped into a big TC. Didn't give the diastat though. Major

> disappointment, but it gives us hope she'll go another 6 days (can't

> say 7

> now) then 8 etc.

> She takes the bugs bunny vitamin/mineral, but we were also told to get

> the

> non sodium salt (can't remember the name now) which will give her

> extra

> potassium.

Sorry about the seizure, but always nice to set a new record

BTW are you using a calcium supplement as well? Please say yes......

, 's mom

[Guest guest]

Could the constipation be the culprit? We are keeping our fingers crossed that

Stella

will stay better, even if she has a few szs here and there....

Lots of love

Rose - Ben's mum

[Guest guest]

Constipation easily brings on seizures.

Bugs Bunny is inadequate for someone on the diet. You need to use an

adult strength multivitamin and minerals. Some people alternate the bugs

bunny and the adult one. Also think about adding milk of magnesia. It

helps with extra magnesium, reflux and constipation.

Bill

and Stansfield-lyons wrote:

> Okay I spoke to soon, yesterday was my older daughters school picnic and

> stella was having so much fun running around, sure enough 15mins later she

> dropped into a big TC. Didn't give the diastat though. Major

> disappointment, but it gives us hope she'll go another 6 days (can't say 7

> now) then 8 etc.

> She takes the bugs bunny vitamin/mineral, but we were also told to get the

> non sodium salt (can't remember the name now) which will give her extra

> potassium. So we'll try that, and not to do the reflux meds yet, but she

> always has terrible stomach pains, always pushing in her tummy and asking us

> to rub it, that's how she falls asleep at bed time is with tummy rubs. Her

> platelet count was low but it was function of the platelets that was

> worrying the doc.

> I've started giving her colace everyday now as she is so constipated again,

> it's always something isn't it.

>

>