Re: Leaving for vacation...

[Guest guest]

Nan,

I'd be happy to help moderate - just let me know!

I'm happy for you that you get to go on vacation. I'll keep you &

Sevi in my thoughts & prayers. I hope the seizures go away! If you

do end up trying the zonegran, we have special mixing instructions

for the capsules that may be useful to you. The manufacturer figured

out a dose especially for Lucas, since he started zonegran at only 1

1/2 months, and is the youngest they've had on it. Holler if you'd

like me to pass them along. It's been a good med for us - although I

know " meds " is a four-letter word! haha I totally understand the

confusion you feel of whether or not to add it. Lucas' seizures have

been back lately too, and I still can't figure out why.

Anyway, let me know about the moderator thing. I'm more than happy

to lend a hand.

By the way, I took a peek at the pics you posted - ADORABLE!

I'll get some of Lucas up soon.

Heidi

Patti is already helping me as a moderator. Can

> anyone else volunteer? >

Dr. wants us

> to start zonegran and I've actually carried them into the house

now...just

> haven't had the heart to start them yet.

[Guest guest]

Nan,

I'd be happy to help moderate - just let me know!

I'm happy for you that you get to go on vacation. I'll keep you &

Sevi in my thoughts & prayers. I hope the seizures go away! If you

do end up trying the zonegran, we have special mixing instructions

for the capsules that may be useful to you. The manufacturer figured

out a dose especially for Lucas, since he started zonegran at only 1

1/2 months, and is the youngest they've had on it. Holler if you'd

like me to pass them along. It's been a good med for us - although I

know " meds " is a four-letter word! haha I totally understand the

confusion you feel of whether or not to add it. Lucas' seizures have

been back lately too, and I still can't figure out why.

Anyway, let me know about the moderator thing. I'm more than happy

to lend a hand.

By the way, I took a peek at the pics you posted - ADORABLE!

I'll get some of Lucas up soon.

Heidi

Patti is already helping me as a moderator. Can

> anyone else volunteer? >

Dr. wants us

> to start zonegran and I've actually carried them into the house

now...just

> haven't had the heart to start them yet.

[Guest guest]

Heidi...

THANKS...I'll add your name to the moderator list today and get some

directions to you quick. You'll be amazed how easy it is and you'll have

Patti helping! Thanks again!

Interesting about Lucas starting the zonegran at such a young age. Did they

go with it since it considered so safe? Our neuro...who repeatedly pointed

out that I am 'just antimed' kept saying nothing could go wrong... " I can

promise it won't make him worse " were his final words. I've heard that

before! What was your experience...though at a month and a half, it'd be

hard to tell any troubles since they just aren't doing that much at that

age. I'd love to hear more about it though. I've had it since November and

I just now let it cross the threshold of my house! Nan

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[Guest guest]

Nan,

No problem at all - I'm happy to help you out!

As far as the zonegran goes, Lucas is 11 1/2 months old now, so I

guess it's been 10 months already that he's been on it. WOW. I

honestly haven't noticed ANY side effects with him. Of course, Lucas

isn't very active anyway, and isn't verbal yet, so I can't say how it

could affect Sevi as far as those things go, but medically-speaking,

Lucas is fine on it. I don't know why they chose it over the other

drugs available - they started it to replace topamax (which was

HORRIBLE - all Lucas did was sleep and seize - didn't even wake up if

you put him in a bath!), and it seems to have helped him a lot. It's

our neuro's next drug of choice to wean though, which makes me

nervous, but I think she's saving phenobarb for last since the side

effects from that are so well-documented, and as far as the use of

the zonegran in babies, well... we just don't know what it could do.

So we'll have to see. We have to wade through the tranxene wean

first!

What's the dosage they want you to start with for Sevi?

Heidi

> Heidi...

>

> THANKS...I'll add your name to the moderator list today and get

some

> directions to you quick. You'll be amazed how easy it is and

you'll have

> Patti helping! Thanks again!

>

> Interesting about Lucas starting the zonegran at such a young age.

Did they

> go with it since it considered so safe? Our neuro...who repeatedly

pointed

> out that I am 'just antimed' kept saying nothing could go

wrong... " I can

> promise it won't make him worse " were his final words. I've heard

that

> before! What was your experience...though at a month and a half,

it'd be

> hard to tell any troubles since they just aren't doing that much at

that

> age. I'd love to hear more about it though. I've had it since

November and

> I just now let it cross the threshold of my house! Nan

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Heidi...

He wants us to start with 50mg once a day every other day for two weeks...go

into it very slowly given Sev's history on meds. I think I've pretty much

determined to wait. I just started the B6 this last week and only yesterday

got to the higher dose. I'm seeing some good things...playing with toys in

a more active manner, using his body in more normal ways (hard to explain)

and he's slept well for the past two nights...a BIG deal. So, I want to

give this a go, and then I want to try the DMG. So, I think I'll stick to

that plan and not let the vacation scare me into a choice I'm not ready to

make. After 8 meds, I just have so little faith in the next med...whatever

it would have been. Topamax did the same to Sev...it was a nightmare. I

hear my neuro is still saying it's perfectly safe for babies... " safe as

water " was the quote, I believe. I'm assuming he's referring to water near

a toxic waste dump. I'd love to find a neuro for Sev who actually has a

baby with seizures who doesn't do well on the meds...maybe then they'd get

it. Oh well....on to the next idea...Nan

----Original Message Follows----

From: heididoe@...

Reply-To: ketogenic

To: ketogenic

Subject: Re: Leaving for vacation...

Date: Wed, 30 May 2001 19:51:14 -0000

Nan,

No problem at all - I'm happy to help you out!

As far as the zonegran goes, Lucas is 11 1/2 months old now, so I

guess it's been 10 months already that he's been on it. WOW. I

honestly haven't noticed ANY side effects with him. Of course, Lucas

isn't very active anyway, and isn't verbal yet, so I can't say how it

could affect Sevi as far as those things go, but medically-speaking,

Lucas is fine on it. I don't know why they chose it over the other

drugs available - they started it to replace topamax (which was

HORRIBLE - all Lucas did was sleep and seize - didn't even wake up if

you put him in a bath!), and it seems to have helped him a lot. It's

our neuro's next drug of choice to wean though, which makes me

nervous, but I think she's saving phenobarb for last since the side

effects from that are so well-documented, and as far as the use of

the zonegran in babies, well... we just don't know what it could do.

So we'll have to see. We have to wade through the tranxene wean

first!

What's the dosage they want you to start with for Sevi?

Heidi

> Heidi...

>

> THANKS...I'll add your name to the moderator list today and get

some

> directions to you quick. You'll be amazed how easy it is and

you'll have

> Patti helping! Thanks again!

>

> Interesting about Lucas starting the zonegran at such a young age.

Did they

> go with it since it considered so safe? Our neuro...who repeatedly

pointed

> out that I am 'just antimed' kept saying nothing could go

wrong... " I can

> promise it won't make him worse " were his final words. I've heard

that

> before! What was your experience...though at a month and a half,

it'd be

> hard to tell any troubles since they just aren't doing that much at

that

> age. I'd love to hear more about it though. I've had it since

November and

> I just now let it cross the threshold of my house! Nan

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Nan,

I hope you holiday goes really well. Sorry to hear

about the daily sz again. Could it be the B6? Just

wondering. Rohan had nearly two weeks of night

sz around 10.30pm every night. It turned out to be

the vit E we were giving at night. Thought it would

be good (actually, essential) with all the cream he was

taking, but Rohan has a bad reaction to the usual

'good things'. I know Sevi is somewhat similar, that

is why I'd be wary of even vits.

Hope Sevi gets rid of the sz soon and you have a

wonderful holiday.

Saro.

nanett prausa wrote:

> Hi all...

>

> We're leaving Saturday for our camping trip (Bryce Canyon and Mesa

> Verde).

> I'll be gone a week. Patti is already helping me as a moderator. Can

>

> anyone else volunteer? It isn't much of a job...you just help people

> join

> and unsubscribe mostly. It just makes people feel more welcome when

> things

> happen quickly, so I wanted to have another moderator lined up. I

> monitor

> squish and help any new members join yahoo (can can tell you how in a

> few

> sentences). I also a message everyday telling them the group is

> moving and

> how to join. Any takers????

>

> Also...please keep us in your thoughts/prayers. Sev's back to having

> seizures everyday. We had the ambulance out on Sunday again. Dr.

> wants us

> to start zonegran and I've actually carried them into the house

> now...just

> haven't had the heart to start them yet. I added B6 (nuthera) a few

> days

> ago and I want to start the DMG before adding a new drug.

> Anywho...prayers

> and thoughts would be very helpful as we head to the wilderness with

> Sev...they do have paramedics available within 10-20 minutes at most

> areas

> of the park and we have our diastat, but I'd love to just have a

> relaxing

> break! Thanks, Nan

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

>

>

[Guest guest]

From Squish...

Kathy/:

Please share with me your ups and downs on the diet. What are your current

ratios? What foods do you avoid? What works, what doesn't? Grant has been on

it since October and since then, we believe all of his seizures have moved

to

his sleep and they are more numerous now then before going on the diet.

Before, 10-20 per month, now 40,50,60 maybe as many as 100 in May and 99.9%

of them during his sleep.

Kim

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[Guest guest]

Kim...

have youguys investigateda lower ratio to get the ketones lower. My son and

several of the others all have increased seizures at higher ketones. If Sev

gets to moderate, sometimes even low, his seizures will increase. When we

began the diet, before we know this and everything we had been told was to

keep the ketones at the highest level, Sev's seizures were much worse and we

thought the diet wasn't going to work for him. At a lower ratio, we don't

have complete control, but generally, it is better than our best times on

meds by far. Just something to think about when fine tuning...Nan

----Original Message Follows----

Reply-To: ketogenic

To: ketogenic

Subject: Re: Leaving for vacation...

Date: Thu, 31 May 2001 10:47:41 -0600

From Squish...

Kathy/:

Please share with me your ups and downs on the diet. What are your current

ratios? What foods do you avoid? What works, what doesn't? Grant has been on

it since October and since then, we believe all of his seizures have moved

to

his sleep and they are more numerous now then before going on the diet.

Before, 10-20 per month, now 40,50,60 maybe as many as 100 in May and 99.9%

of them during his sleep.

Kim

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com