seizure meds

[Guest guest]

Hi Cassey...

I would get a second opinion from another pediatric neuro, get a video camera

and make some video of the seizure activity... I found that to be tremendously

helpful in explaining things that happen at night...

2-3 minutes is a long time. Have you also considered that she may be

experience muscle spasms? They can cause jerking and can be extremely painful.

had been experiencing them at night as well.

Keep fighting this with the doctors and it is my opinion that no child should

have to " wait and see " when they are clearly experiencing something painful.

I have actually surprised the doctors by coming in with video clips and they

then have something to study.

, is notorious, for being a giggling perfect little angel in the doctors

office...then we go home and all heck breaks lose.

Good luck.

Cassey Stanger wrote:

Hello All,

Hoping you can shed some light on something for me. Emma has been experiencing

short seizures every night this week about an hour after she goes to bed. She

wakes up screaming and when you go in to console her she is jerking and stays

that way for about 2-3 minutes. We had an EEG done back in February that showed

abnormal activity but not epileptic so our neuro said we could just wait and see

if she had anymore seizures. She hadn't had any until this week again but they

have been everyday. He wants to put her on a drug called Trileptal. Have any of

you had any experience with this drug? Do we have any other alternatives besides

putting her on medicine? We are really at a loss. She has been making such great

strides lately in her gross motor skills that we would hate to see them set back

by a side effect of medicine. Any feedback would be appreciated.

Thanks,

Cassey

Mom to Emma Bilateral PMG now 16 months old

---------------------------------

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

Cassey,

You might want to check eplilepsyontario.org. The website has a wealth of

information on meds.

As for Trileptal my son has been on that med for quite sometime. It is a

derivative of Carbatrol, but more effective. My son takes the liquid form

twice a day. Most meds have side effects. I haven't found any extreme side

effects with this medication.

Initially my son was a little sleepy, but his body got use to the med.

As for alternatives, I only know of one the Keto diet. We haven't tried

that.

Hope this has helped some.

Patty, mom to fifteen year old Wesley, bilateral pmg

[Guest guest]

one more thing. I have not had experience with Trileptal but dont mess around

with seizures.. they can worsen if not controlled.. is on Keppra and

he has not been affected in terms of his daily activity. but he is 8..Emma is

still pretty tiny...

If her seizures are increasing... they may get worse... had one

seizure that would not stop a year ago. Despite meds. No one ever told me

that a seizure could result in intubation and 24 hours of life support...

then he came around from it...giggling and laughing at me as if nothing had

happened. The little stinker.

She'll be ok if you stick to it and get her the right medicine. If it is

spasms...baclofen helps with that.

But do the video clips... it gives you amunition when you have to explain

what you are seeing and experiencing.

Good luck.

JULIE HASSELBERGER wrote:

Hi Cassey...

I would get a second opinion from another pediatric neuro, get a video camera

and make some video of the seizure activity... I found that to be tremendously

helpful in explaining things that happen at night...

2-3 minutes is a long time. Have you also considered that she may be

experience muscle spasms? They can cause jerking and can be extremely painful.

had been experiencing them at night as well.

Keep fighting this with the doctors and it is my opinion that no child should

have to " wait and see " when they are clearly experiencing something painful.

I have actually surprised the doctors by coming in with video clips and they

then have something to study.

, is notorious, for being a giggling perfect little angel in the doctors

office...then we go home and all heck breaks lose.

Good luck.

Cassey Stanger wrote:

Hello All,

Hoping you can shed some light on something for me. Emma has been experiencing

short seizures every night this week about an hour after she goes to bed. She

wakes up screaming and when you go in to console her she is jerking and stays

that way for about 2-3 minutes. We had an EEG done back in February that showed

abnormal activity but not epileptic so our neuro said we could just wait and see

if she had anymore seizures. She hadn't had any until this week again but they

have been everyday. He wants to put her on a drug called Trileptal. Have any of

you had any experience with this drug? Do we have any other alternatives besides

putting her on medicine? We are really at a loss. She has been making such great

strides lately in her gross motor skills that we would hate to see them set back

by a side effect of medicine. Any feedback would be appreciated.

Thanks,

Cassey

Mom to Emma Bilateral PMG now 16 months old

---------------------------------

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

Hi to everyone, sorry haven't posted in a very long time. Leah has been

through a lot since I last posted.

As far as Trileptal, Leah was on it for a while but it failed her along with

many others. You never know how your child will do unless you try it. I was

told it is a very good seizure drug.

I thought 1 to 3 minute seizures were a long time too until Leah started

experiencing 5 min up to 60 min seizures beginning November of 2004 and is still

uncontrolled. It is so frustrating since we have tried everything possible to

control them.

She was on the Ketogenic Diet for about 6 months before we decided it wasn't

going to work. She had the Vagal Nerve Stimulator implanted in December 2005

and still have not been able to control her seizures.

I had to call paramedics on Mother's Day because Leah went into status

epilepticus. I applied the magnet to the VNS and it did not work, then I gave

her the Diastat and that didn't work, so at 20 minutes into the seizure I gave

her 1mg of Ativan via g-tube, then at 30 minutes into the seizure I called for

help. The paramedics gave her 1mg of Versed nasally, then another 1 mg of

Versed IM. She was taken to the hospital and we had to stay the night in the ER

because Transport could not pick her up until the morning, which was a good

thing because I did not think I could drive safely following transport at

midnight. The bad thing was that the hospital ER was so crazy busy that day. A

full arrest came in and was in the next bed to us. Patient expired right there.

I was able to get some sleep even with all the craziness. I slept in the gurney

with Leah.

At Loma she really didn't have any significant events, it seemed that

she tried to seize a couple of times but the magnet seemed to have stopped them.

She was discharged the next day.

I really have to mention that her Neurologists at Loma are the best.

They listen to you and really take in what you say. They are so caring and try

to help you any way they can.

Well I thought Leah was going to get better. I had to take her back this past

Thursday. She woke up with 102.3 temperature, so I gave her some Tylenol and

then put her in the bathtub. She went into a seizure while I was bathing her.

That was seizure number two. I drove her to Loma that afternoon to see

her neuro. He changed her antibiotic and made her VNS stronger. We then went

to Loma hospital to get her Rx filled and while we were in line, Leah went

into another seizure. I had to get her out of her wheelchair and put her down

on the floor, and as I was getting the Diastat she hit her head on the wall. I

had it under control, but the patients were really scared and were trying to

help. I told them that Leah has these all the time, but you can imaging how

witnessing a child having a seizure can be scary for a lot of people. They were

trying to get me help but the people there in the pharmacy did not know what to

do. I saw a nurse down the hall but she was just standing there watching. I

was okay but I was concerned for the other people. That seizure lasted 10

minutes and it was her third one that day.

I work in a hospital and in under the same circumstances a code white would

have been called.

Sorry so long, and it could have been even longer but I know I would even have

trouble reading something so long.

Hope you find your answer soon. Please document everything as a kept record

is so valuable when you see your doctor. I keep a seizure log and it has been

so helpful, because there is no way to remember all events exactly.

I also videotaped some of Leah's seizures. It is hard to watch them still.

Elena, mom to Leah 3 yrs PMG, VNS, G-tube, many meds, retractable seizures,

18 yrs, and Emilio 12yrs.

Re: Seizure Meds

Hi Cassey...

I would get a second opinion from another pediatric neuro, get a video camera

and make some video of the seizure activity... I found that to be tremendously

helpful in explaining things that happen at night...

2-3 minutes is a long time. Have you also considered that she may be

experience muscle spasms? They can cause jerking and can be extremely painful.

had been experiencing them at night as well.

Keep fighting this with the doctors and it is my opinion that no child should

have to " wait and see " when they are clearly experiencing something painful.

I have actually surprised the doctors by coming in with video clips and they

then have something to study.

, is notorious, for being a giggling perfect little angel in the

doctors office...then we go home and all heck breaks lose.

Good luck.

Cassey Stanger wrote:

Hello All,

Hoping you can shed some light on something for me. Emma has been

experiencing short seizures every night this week about an hour after she goes

to bed. She wakes up screaming and when you go in to console her she is jerking

and stays that way for about 2-3 minutes. We had an EEG done back in February

that showed abnormal activity but not epileptic so our neuro said we could just

wait and see if she had anymore seizures. She hadn't had any until this week

again but they have been everyday. He wants to put her on a drug called

Trileptal. Have any of you had any experience with this drug? Do we have any

other alternatives besides putting her on medicine? We are really at a loss. She

has been making such great strides lately in her gross motor skills that we

would hate to see them set back by a side effect of medicine. Any feedback would

be appreciated.

Thanks,

Cassey

Mom to Emma Bilateral PMG now 16 months old

---------------------------------

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

I know I live in the UK and medication is slightly different, but the

mix of meds that my daughter is on is finally working. Saskia is now

8 years old and has many different types of seizures like many of the

children on here. She has not had a seizure for 2 weeks even though

we had to slowly introduce one and take away another! She is on 9mls

of Sodium Valporate twice daily, 3 x 10mg of Clobazam and 2 x 5mg of

Lamortrigine. All this is bound together with 2.5mls of omega3

(maxepa). Doctors haven't even mentioned help with getting rid of the

constant drooling though! I hope this will give some of you some hope

that eventually medication can work. The last mix of medications

worked for a while which involved ethosuximide, but she did react

badly to it a times and on one occasion she was overdosed and nearly

had organ failure. Saskia would not eat in a morning and so ended up

taking meds on an empty stomach. This combination may have caused her

to lose weight thus possibly then shifting the balance, hense an

inbalance of medication to ratio of body mass.

Saskia still cannot talk, but is getting more cognitive as time goes

on, she can now walk (runs) she has ADHD and autistic tendencies

though. She has a right sided weakness as apparently the PMG covers a

lot of the left side of the brain. Her drooling is bad and still

chokes a lot when she eats. The laughter and giggling has brought

more love and laughter to family life in general. Saskia does have one

more brother and 2 other sisters that live in the household. I

consider her as a gift and with out her I would not be the person I am

today. I have my confidence back due to the fact that I know that she

can't fight for herself so now I have to do it. I also find the

strength from somewhere even when she has been up all night. I take

each day as it comes and I try to take out the positive in each moment

and now don't find any negatives. I take each day as a lesson it so

helps me stop being a victim like I always have been in the past. I

have written this to help give back everyone HOPE. Its not the end, I

feel that it is just the beginning......

Love and hugs

[Guest guest]

Blessings on you, .

I've been feeling a little beaten by the whole process lately and your

posting is helping me refocus. Thanks for sharing your experience and

the wisdom you've gained.

(the one who is mom to 5) ;o)

[Guest guest]

,

How wonderful that the magic combination was found to control Saskia's

seizures. We will soon be switching doctors at the suggestion of Dobyn's as he

wants us to see a neurologist who will more aggressively treat Marz's seizures.

He's recommended a medication she has not tried yet, and like you, we are hoping

this will be the magic combination. When you hear words like " refractory " ,

" intractable " and catastrophic " to describe the type of epilepsy your child has,

it's easy to give up hope. Especially after fighting it for so many years with

little success. But you can't ever give up, news like Dobyns gave us last week

and hearing about kids like Saskia, really renew our hope and drive to persevere

and find a solution.

Penny

wrote:

I know I live in the UK and medication is slightly different, but the

mix of meds that my daughter is on is finally working. Saskia is now

8 years old and has many different types of seizures like many of the

children on here. She has not had a seizure for 2 weeks even though

we had to slowly introduce one and take away another! She is on 9mls

of Sodium Valporate twice daily, 3 x 10mg of Clobazam and 2 x 5mg of

Lamortrigine. All this is bound together with 2.5mls of omega3

(maxepa). Doctors haven't even mentioned help with getting rid of the

constant drooling though! I hope this will give some of you some hope

that eventually medication can work. The last mix of medications

worked for a while which involved ethosuximide, but she did react

badly to it a times and on one occasion she was overdosed and nearly

had organ failure. Saskia would not eat in a morning and so ended up

taking meds on an empty stomach. This combination may have caused her

to lose weight thus possibly then shifting the balance, hense an

inbalance of medication to ratio of body mass.

Saskia still cannot talk, but is getting more cognitive as time goes

on, she can now walk (runs) she has ADHD and autistic tendencies

though. She has a right sided weakness as apparently the PMG covers a

lot of the left side of the brain. Her drooling is bad and still

chokes a lot when she eats. The laughter and giggling has brought

more love and laughter to family life in general. Saskia does have one

more brother and 2 other sisters that live in the household. I

consider her as a gift and with out her I would not be the person I am

today. I have my confidence back due to the fact that I know that she

can't fight for herself so now I have to do it. I also find the

strength from somewhere even when she has been up all night. I take

each day as it comes and I try to take out the positive in each moment

and now don't find any negatives. I take each day as a lesson it so

helps me stop being a victim like I always have been in the past. I

have written this to help give back everyone HOPE. Its not the end, I

feel that it is just the beginning......

Love and hugs