stella in ER then ICU now finally home!!

[Guest guest]

What a roller coaster past few days. It started Wed which i already

posted. GM AM seizure during sleep, fine during the day. GM PM seizure

just before bed, then myoclonics in bed before falling asleep. Woke at

4:30am with multiple GM's, gave 1st dose of diastat since she was

clustering.

Woke up aprox 9am, and was in her 'comatose' state, no responsiveness,

not to pain, light, loud noise etc. This was her state for over 24

hours, however she would have another 8 GM's throughout out the day,

after 2 more doses of diastat to try to bring her round it was obvious

that was not going to happen. I called the neuro on call here in

seattle at children's, she asked the attending, who said to give her

another dose of the diastat, and to crush up all her PM meds and give

them to her rectally along with another 200-mg of lamictal. We were

down in portland during this, so we drove back to seattle to be at our

hospital.

In the AM we gave her another dose of diastat because she was still

having GM's. Told the hospital we were on our way.

We get into the ER and she is still non responsive to the medical team

there. They gave her 2 doses of IV dilantin, and she still seized,

myoclonics which turned into forceful GM's, so a dose of ativan was

given, which knocked her out. She was moved to the ICU for respiratory

failure watch, then finally when she woke, down to the medical floor.

We are home now, with a very drunk little girl. The drugs they gave

her kept her up until 5-am, such a lot!!

The funny things is her BHB level was the highest it has ever been from

the labs we took the day prior to her VNS surgery, she was eating her

food well, was on the klonopin.

Now she is back on the klonopin for a month to wean her off of it very

slow, on dilantin which we know lowers the lamictal levels, there is

talk of adding Vit B6 but that has not been done yet. Way too much has

happened to my little girl. They took some blood to check for the

mytocondrolyn diseases (i know I spelt that wrong) and a gene

chromosome diffiency research, so maybe we'll get some news soon.

amanda

[Guest guest]

Glad you are home, hope she is doing better soon. A shame how these kids

have to suffer.

stella in ER then ICU now finally home!!

>

> What a roller coaster past few days. It started Wed which i already

> posted. GM AM seizure during sleep, fine during the day. GM PM seizure

> just before bed, then myoclonics in bed before falling asleep. Woke at

> 4:30am with multiple GM's, gave 1st dose of diastat since she was

> clustering.

> Woke up aprox 9am, and was in her 'comatose' state, no responsiveness,

> not to pain, light, loud noise etc. This was her state for over 24

> hours, however she would have another 8 GM's throughout out the day,

> after 2 more doses of diastat to try to bring her round it was obvious

> that was not going to happen. I called the neuro on call here in

> seattle at children's, she asked the attending, who said to give her

> another dose of the diastat, and to crush up all her PM meds and give

> them to her rectally along with another 200-mg of lamictal. We were

> down in portland during this, so we drove back to seattle to be at our

> hospital.

> In the AM we gave her another dose of diastat because she was still

> having GM's. Told the hospital we were on our way.

> We get into the ER and she is still non responsive to the medical team

> there. They gave her 2 doses of IV dilantin, and she still seized,

> myoclonics which turned into forceful GM's, so a dose of ativan was

> given, which knocked her out. She was moved to the ICU for respiratory

> failure watch, then finally when she woke, down to the medical floor.

> We are home now, with a very drunk little girl. The drugs they gave

> her kept her up until 5-am, such a lot!!

> The funny things is her BHB level was the highest it has ever been from

> the labs we took the day prior to her VNS surgery, she was eating her

> food well, was on the klonopin.

>

> Now she is back on the klonopin for a month to wean her off of it very

> slow, on dilantin which we know lowers the lamictal levels, there is

> talk of adding Vit B6 but that has not been done yet. Way too much has

> happened to my little girl. They took some blood to check for the

> mytocondrolyn diseases (i know I spelt that wrong) and a gene

> chromosome diffiency research, so maybe we'll get some news soon.

>

> amanda

>

>

>

>

> " 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]

Oh,

What a nightmare you and Stella have been through. You will be in my prayers.

.

stansfield/lyonsfamily astansfield@...> wrote:

What a roller coaster past few days. It started Wed which i already

posted. GM AM seizure during sleep, fine during the day. GM PM seizure

just before bed, then myoclonics in bed before falling asleep. Woke at

4:30am with multiple GM's, gave 1st dose of diastat since she was

clustering.

Woke up aprox 9am, and was in her 'comatose' state, no responsiveness,

not to pain, light, loud noise etc. This was her state for over 24

hours, however she would have another 8 GM's throughout out the day,

after 2 more doses of diastat to try to bring her round it was obvious

that was not going to happen. I called the neuro on call here in

seattle at children's, she asked the attending, who said to give her

another dose of the diastat, and to crush up all her PM meds and give

them to her rectally along with another 200-mg of lamictal. We were

down in portland during this, so we drove back to seattle to be at our

hospital.

In the AM we gave her another dose of diastat because she was still

having GM's. Told the hospital we were on our way.

We get into the ER and she is still non responsive to the medical team

there. They gave her 2 doses of IV dilantin, and she still seized,

myoclonics which turned into forceful GM's, so a dose of ativan was

given, which knocked her out. She was moved to the ICU for respiratory

failure watch, then finally when she woke, down to the medical floor.

We are home now, with a very drunk little girl. The drugs they gave

her kept her up until 5-am, such a lot!!

The funny things is her BHB level was the highest it has ever been from

the labs we took the day prior to her VNS surgery, she was eating her

food well, was on the klonopin.

Now she is back on the klonopin for a month to wean her off of it very

slow, on dilantin which we know lowers the lamictal levels, there is

talk of adding Vit B6 but that has not been done yet. Way too much has

happened to my little girl. They took some blood to check for the

mytocondrolyn diseases (i know I spelt that wrong) and a gene

chromosome diffiency research, so maybe we'll get some news soon.

amanda

" 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]

,

Oh, I am so very sorry that you and Stella have had to go through so

much. Reading your account brought back the memory of our episode

with Langan at the airport last month. I am so very happy that

Stella is home. I hope this was the last time that you and she ever

have to go through anything like this. Please know that you, Stella

and your family are in our prayers!

, mom to Langan, 2 yrs old and keto kid 11/03 to 9/7/04, weaned

due to persistent metabolic acidosis (now thought to be pre-existing

and exacerbated by keto), but keto kid at heart forever

> What a roller coaster past few days. It started Wed which i

already

> posted. GM AM seizure during sleep, fine during the day. GM PM

seizure

> just before bed, then myoclonics in bed before falling asleep.

Woke at

> 4:30am with multiple GM's, gave 1st dose of diastat since she was

> clustering.

> Woke up aprox 9am, and was in her 'comatose' state, no

responsiveness,

> not to pain, light, loud noise etc. This was her state for over

24

> hours, however she would have another 8 GM's throughout out the

day,

> after 2 more doses of diastat to try to bring her round it was

obvious

> that was not going to happen. I called the neuro on call here in

> seattle at children's, she asked the attending, who said to give

her

> another dose of the diastat, and to crush up all her PM meds and

give

> them to her rectally along with another 200-mg of lamictal. We

were

> down in portland during this, so we drove back to seattle to be at

our

> hospital.

> In the AM we gave her another dose of diastat because she was

still

> having GM's. Told the hospital we were on our way.

> We get into the ER and she is still non responsive to the medical

team

> there. They gave her 2 doses of IV dilantin, and she still

seized,

> myoclonics which turned into forceful GM's, so a dose of ativan

was

> given, which knocked her out. She was moved to the ICU for

respiratory

> failure watch, then finally when she woke, down to the medical

floor.

> We are home now, with a very drunk little girl. The drugs they

gave

> her kept her up until 5-am, such a lot!!

> The funny things is her BHB level was the highest it has ever been

from

> the labs we took the day prior to her VNS surgery, she was eating

her

> food well, was on the klonopin.

>

> Now she is back on the klonopin for a month to wean her off of it

very

> slow, on dilantin which we know lowers the lamictal levels, there

is

> talk of adding Vit B6 but that has not been done yet. Way too

much has

> happened to my little girl. They took some blood to check for the

> mytocondrolyn diseases (i know I spelt that wrong) and a gene

> chromosome diffiency research, so maybe we'll get some news soon.

>

> amanda

[Guest guest]

- I do hope you get some answers soon! What an awful time stella is

having and her folks as well! We will keep you in our prayers!

Leigh

Sign up for Internet Service under $10 dollars a month, at

https://signup.mybluelight.com

[Guest guest]

:

I am so sorry to hear about Stella! Hope everything is going better for you guys

now that you are home. Our prayers go out!

stella in ER then ICU now finally home!!

What a roller coaster past few days. It started Wed which i already

[Guest guest]

So sorry to hear about Stella's ordeal. I am amazed at what sounded

like relative calm from you and Stella's father as she remained

unresponsive and in your care for so long. What's up with the VNS?

Did they put it in but not turn it on, yet? OR was the VNS surgery

delayed? Not to be a pest about it, but I still don't understand

this medicine issue. When my son didn't respond to a heavy dose of

some dilantin related drug when he was hospitalized a year ago, the

feeling from the docs was that the meds don't work, so they didn't

try any more. Maybe it had something to do with him throwing

everything up. Maybe I just didn't understand the situation. Tell

me to " bug off " if you get tired of my rants. I just really feel

for you guys and for little Stella and her big sister. I'm pulling

for you all.

Gretchen

> What a roller coaster past few days. It started Wed which i

already

> posted. GM AM seizure during sleep, fine during the day. GM PM

seizure

> just before bed, then myoclonics in bed before falling asleep.

Woke at

> 4:30am with multiple GM's, gave 1st dose of diastat since she was

> clustering.

> Woke up aprox 9am, and was in her 'comatose' state, no

responsiveness,

> not to pain, light, loud noise etc. This was her state for over

24

> hours, however she would have another 8 GM's throughout out the

day,

> after 2 more doses of diastat to try to bring her round it was

obvious

> that was not going to happen. I called the neuro on call here in

> seattle at children's, she asked the attending, who said to give

her

> another dose of the diastat, and to crush up all her PM meds and

give

> them to her rectally along with another 200-mg of lamictal. We

were

> down in portland during this, so we drove back to seattle to be at

our

> hospital.

> In the AM we gave her another dose of diastat because she was

still

> having GM's. Told the hospital we were on our way.

> We get into the ER and she is still non responsive to the medical

team

> there. They gave her 2 doses of IV dilantin, and she still

seized,

> myoclonics which turned into forceful GM's, so a dose of ativan

was

> given, which knocked her out. She was moved to the ICU for

respiratory

> failure watch, then finally when she woke, down to the medical

floor.

> We are home now, with a very drunk little girl. The drugs they

gave

> her kept her up until 5-am, such a lot!!

> The funny things is her BHB level was the highest it has ever been

from

> the labs we took the day prior to her VNS surgery, she was eating

her

> food well, was on the klonopin.

>

> Now she is back on the klonopin for a month to wean her off of it

very

> slow, on dilantin which we know lowers the lamictal levels, there

is

> talk of adding Vit B6 but that has not been done yet. Way too

much has

> happened to my little girl. They took some blood to check for the

> mytocondrolyn diseases (i know I spelt that wrong) and a gene

> chromosome diffiency research, so maybe we'll get some news soon.

>

> amanda

[Guest guest]

Gretchen,

We weren't calm on the inside, but we have to hold it together for our older

daughter, she'll fall apart if she sees us falling apart.

I'm thinking the same as you with the drugs as far as them not working, I'd

like to see her off all drugs and try the diet/vns alone. My husband is not

supportive of the diet anymore however, we are having battles about that, he

thinks it is making her worse. I am trying to point out the correlation

between the increase of meds and increase of seizures, but to no avail.

Stella refuses to eat for anyone buy me, she's just not hungry!!! I have a

routine with her which she understands, and follows, i'm also so heavily

invested in her care, he seems more passive about the diet, especially since

I do all the work with it. I'm still fighting for the drug free days

though.

The VNS surgery went well, they never turn it on right away, they wait about

10 days to make sure she has no problem/rejection etc. Her's gets turned on

Wednesday. It gets tweaked every week-10 days until some benefit is seen.

Thanks for your and everyone elses thoughts, it really helps to have you all

on my side, this diet is a challenge and to not a support group makes it

even harder.

amanda

--

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

waiting to be seizure free. On Lamictal, weaned her off the epam and

Diamox. VNS as of 11/19/04. Big sister Anisa is almost 10 and a happy

healthy girl.

[Guest guest]

, so sorry to hear this. When are they switching on the VNS?

Rohan had an episode of unconsciousness after a brief sz once. It was

thought to be because his dose of Keppra was a bit too high( I think

they were guessing) At first we thought he was asleep after the sz

but later when we couldn't rouse him we called our GP who gave him

Midozolam and called an ambulance. He didn't respond to diazepam

or loazepam and was unconscious for about 8-9 hrs. They tried that

smelly med (can't remember the name just now, but it's an old one) too.

We were really scared. Then he woke up and was a bit groggy but

nothing drastic. We were asked to reduce the Keppra dose on which

he had been OK for a month prior to that.

Just wondered whether Stella's could be a similar thing.

Hope she's OK now and the VNS would kick in soon.

Saro

>

>

>

>>What a roller coaster past few days. It started Wed which i

>>

>>

>already

>

>

>>posted. GM AM seizure during sleep, fine during the day. GM PM

>>

>>

>seizure

>

>

>>just before bed, then myoclonics in bed before falling asleep.

>>

>>

>Woke at

>

>

>>4:30am with multiple GM's, gave 1st dose of diastat since she was

>>clustering.

>>Woke up aprox 9am, and was in her 'comatose' state, no

>>

>>

>responsiveness,

>

>

>>not to pain, light, loud noise etc. This was her state for over

>>

>>

>24

>

>

>>hours, however she would have another 8 GM's throughout out the

>>

>>

>day,

>

>

>>after 2 more doses of diastat to try to bring her round it was

>>

>>

>obvious

>

>

>>that was not going to happen. I called the neuro on call here in

>>seattle at children's, she asked the attending, who said to give

>>

>>

>her

>

>

>>another dose of the diastat, and to crush up all her PM meds and

>>

>>

>give

>

>

>>them to her rectally along with another 200-mg of lamictal. We

>>

>>

>were

>

>

>>down in portland during this, so we drove back to seattle to be at

>>

>>

>our

>

>

>>hospital.

>>In the AM we gave her another dose of diastat because she was

>>

>>

>still

>

>

>>having GM's. Told the hospital we were on our way.

>>We get into the ER and she is still non responsive to the medical

>>

>>

>team

>

>

>>there. They gave her 2 doses of IV dilantin, and she still

>>

>>

>seized,

>

>

>>myoclonics which turned into forceful GM's, so a dose of ativan

>>

>>

>was

>

>

>>given, which knocked her out. She was moved to the ICU for

>>

>>

>respiratory

>

>

>>failure watch, then finally when she woke, down to the medical

>>

>>

>floor.

>

>

>>We are home now, with a very drunk little girl. The drugs they

>>

>>

>gave

>

>

>>her kept her up until 5-am, such a lot!!

>>The funny things is her BHB level was the highest it has ever been

>>

>>

>from

>

>

>>the labs we took the day prior to her VNS surgery, she was eating

>>

>>

>her

>

>

>>food well, was on the klonopin.

>>

>>Now she is back on the klonopin for a month to wean her off of it

>>

>>

>very

>

>

>>slow, on dilantin which we know lowers the lamictal levels, there

>>

>>

>is

>

>

>>talk of adding Vit B6 but that has not been done yet. Way too

>>

>>

>much has

>

>

>>happened to my little girl. They took some blood to check for the

>>mytocondrolyn diseases (i know I spelt that wrong) and a gene

>>chromosome diffiency research, so maybe we'll get some news soon.

>>

>>amanda

>>

>>

>

>

>

>

>

>

> " 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

>

>

>