Re: Seizure Medication

October 26, 2006

Hi Dom what a good idea...

is six she is on epilim 8mls twice daily she has been on this since

her first sezuire age two doesnt seem to be any major problems with it except

her behaviour which is uncertain if its due to her disability or the epilim,she

only seems to have sezuires when she gets ill and she had one after having the

MMR injection so they are fairly well controlled. Charlotte

b_chlo wrote:

I think it would be of interest to us all which Medication, what dose,

and age of child we all give this to. Along with effectiveness and

level of disability.

Post to the group:

age

mild, mid or severe disability

medicine(s) and Dose(s)

effectiveness of the medicines and also medicines that were not

effective or maybe made things worst.

My daughter is 5 (underweight), servere disability, on Topamax 2 x

50mg, Kepra 2 x 2.5mls, Lamotrigine 2 x 10mg daily. We are still

trying although seems 80% controlled.

Increasing Kepra seemed to cause more seizures. Epilim seemed only

alittle effective so withdrawn.

Look forward to reading all of your experiences.

Dom, father to our lovely Chloe. (U.K.)

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October 26, 2006

Trevor Delzer

age 10.......next month 11 yrs old

moderate disability...too many to name

Currently taking Trileptal(1050mg a day), Lamictal(500mg a day)

He still has short seizures a few times a week where he stares, swallows several

times for usually less than a minute.

Have been on Neurotin, Tegretol, Depakote,Lamictal(soley), Trileptal(soley),

Lamictal and Trileptal together, Keppra(behavior worse), Zonogran

Increase in Trileptal caused worse side effects. Tried to take him off it once

and start something else but he started having break through seizures so we

stopped.

I hate the med merry go round.......

Looking to get the VNS next month. We've been thinking it over for years now

and ready to move forward with it.

Donna

October 27, 2006

Good idea...

Sophia, age 2.5, weight 25 pounds, tonic clonic seizures

Topamax 75mg am, 50 mg pm and Depakene 125mg 4X/day

also Polycitra & Pepcid

She's been on Phenobarb but her neuro felt it wasn't helping and

didn't want to keep her on it because of the side effects. On our

current mix she's had no seizures in two years, although one

breakthrough this past april, so it must be working well. We don't

notice major side effects but are always worried about the big ones

(liver failure, pancreatitis, etc). I do think that she has a bad

appetite from the Topamax and trouble regulating body temp, but the

appetite could be from the feeding issues.

I'm not sure how to categorize her disability. She's 8-10 months

gross motor skill wise, and 12-15 everywhere else. She's in pretty

good health overall and we're grateful for it.

My other yahoo group for Ohtahara Syndrome made a website, and we

started polling members on meds and side effects. Only a few are

listed, but here are some more opinions along the same lines....

http://www.ohtaharasyndrome.org/

>

> I think it would be of interest to us all which Medication, what

dose,

> and age of child we all give this to. Along with effectiveness and

> level of disability.

>

> Post to the group:

> age

> mild, mid or severe disability

> medicine(s) and Dose(s)

> effectiveness of the medicines and also medicines that were not

> effective or maybe made things worst.

>

> My daughter is 5 (underweight), servere disability, on Topamax 2 x

> 50mg, Kepra 2 x 2.5mls, Lamotrigine 2 x 10mg daily. We are still

> trying although seems 80% controlled.

> Increasing Kepra seemed to cause more seizures. Epilim seemed only

> alittle effective so withdrawn.

>

> Look forward to reading all of your experiences.

>

> Dom, father to our lovely Chloe. (U.K.)

>

October 27, 2006

Molly is 2 years old with a severe seizure disorder (on good days >5/day and on

bad days up to 50+/day)...seizures since birth that started out as infantile

spasms.

Severely disabled...

Meds we've tried:

vitamin B6-no change

prednisone (for infantile spasms)-no change

dilantin-decent seizure control, bad side effects--gum over growth, hard to

maintain good levels (often too high or too low)

topamax-made seizures longer, difficult to wean

keppra-limited seizure control, bad behavioral side effects

depakene-moderate control when used with phenobarbklonopin-difficulty with

overproduction of secretions, stopped after day 3 because of breathing trouble

due to secretions

phenobarb-no change when given along, moderate control when paired with dilantin

or depakene

Molly had epilepsy surgery over the summer to remove the seizure focus and has

been seizure free since July! She's still taking phenobarb (30mg am and 45mg

pm) and depakene (280mg 3x/day) to stabilize her EEG.

To: polymicrogyria@...: b_chlo@...: Thu, 26 Oct

2006 20:16:30 +0000Subject: Seizure Medication

I think it would be of interest to us all which Medication, what dose,and age of

child we all give this to. Along with effectiveness andlevel of disability.Post

to the group:agemild, mid or severe disabilitymedicine(s) and

Dose(s)effectiveness of the medicines and also medicines that were noteffective

or maybe made things worst.My daughter is 5 (underweight), servere disability,

on Topamax 2 x50mg, Kepra 2 x 2.5mls, Lamotrigine 2 x 10mg daily. We are

stilltrying although seems 80% controlled.Increasing Kepra seemed to cause more

seizures. Epilim seemed onlyalittle effective so withdrawn.Look forward to

reading all of your experiences.Dom, father to our lovely Chloe. (U.K.)

_________________________________________________________________

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October 27, 2006

, I have looked at the site, http://www.ohtaharasyndrome.org/.

What determines this diagnosis as opposed to pmg? The symptoms are much the

same. Is it down to a MRI scan showing the gyri pattern of pmg, or is this seen

with ohtahara syndrome too?

Dom

Re: Seizure Medication

Good idea...

Sophia, age 2.5, weight 25 pounds, tonic clonic seizures

Topamax 75mg am, 50 mg pm and Depakene 125mg 4X/day

also Polycitra & Pepcid

She's been on Phenobarb but her neuro felt it wasn't helping and

didn't want to keep her on it because of the side effects. On our

current mix she's had no seizures in two years, although one

breakthrough this past april, so it must be working well. We don't

notice major side effects but are always worried about the big ones

(liver failure, pancreatitis, etc). I do think that she has a bad

appetite from the Topamax and trouble regulating body temp, but the

appetite could be from the feeding issues.

I'm not sure how to categorize her disability. She's 8-10 months

gross motor skill wise, and 12-15 everywhere else. She's in pretty

good health overall and we're grateful for it.

My other yahoo group for Ohtahara Syndrome made a website, and we

started polling members on meds and side effects. Only a few are

listed, but here are some more opinions along the same lines....

http://www.ohtaharasyndrome.org/

>

> I think it would be of interest to us all which Medication, what

dose,

> and age of child we all give this to. Along with effectiveness and

> level of disability.

>

> Post to the group:

> age

> mild, mid or severe disability

> medicine(s) and Dose(s)

> effectiveness of the medicines and also medicines that were not

> effective or maybe made things worst.

>

> My daughter is 5 (underweight), servere disability, on Topamax 2 x

> 50mg, Kepra 2 x 2.5mls, Lamotrigine 2 x 10mg daily. We are still

> trying although seems 80% controlled.

> Increasing Kepra seemed to cause more seizures. Epilim seemed only

> alittle effective so withdrawn.

>

> Look forward to reading all of your experiences.

>

> Dom, father to our lovely Chloe. (U.K.)

>

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October 28, 2006

Ohtahara is determined by seizure type (tonic clonic), age of onset

(2 weeks to 3 months), and EEG pattern (burst suppression). There

are a variety of causes for the syndrome, but most kids have normal

MRIs and never find a cause.

Sophia's first MRI at 2 weeks didn't show any abnormality, so our

diagnosis was Ohtahara Syndrome, cause unknown. The next one at five

months showed areas of " cortical dysplasia and/or polymicrogyria " so

now we're OS as caused by left PMG. Now that we have the PMG

determination, I treat that as the real issue. Other doctors have

called into question the original diagnosis because of the cause and

because Sophia's development and seizure control are much better

than the diagnosis would indicate.

> >

> > I think it would be of interest to us all which Medication,

what

> dose,

> > and age of child we all give this to. Along with effectiveness

and

> > level of disability.

> >

> > Post to the group:

> > age

> > mild, mid or severe disability

> > medicine(s) and Dose(s)

> > effectiveness of the medicines and also medicines that were not

> > effective or maybe made things worst.

> >

> > My daughter is 5 (underweight), servere disability, on Topamax

2 x

> > 50mg, Kepra 2 x 2.5mls, Lamotrigine 2 x 10mg daily. We are

still

> > trying although seems 80% controlled.

> > Increasing Kepra seemed to cause more seizures. Epilim seemed

only

> > alittle effective so withdrawn.

> >

> > Look forward to reading all of your experiences.

> >

> > Dom, father to our lovely Chloe. (U.K.)

> >

>

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

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>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.408 / Virus Database: 268.13.17/505 - Release Date:

27/10/2006

>

October 29, 2006

,

I have done some reading on Ohtahara since it can be a precurser to

Lennox Gastaut (LGS). From what I've read (but I'm not sure if this

is accurate)the Ohtahara EEG patterns (burst suppression)occur

during short period of the first year then often evolve into west

syndrome. If an EEG is not done during that period to catch it, you

may never know if your child had Ohtahara's. Again, not sure if

that's true, need to talk to the neuro about this.

Here is the reason for my interest in Ohtahara, its one of the age

related seizure disorders, like LGS. nela has LGS and I've

heard that if it was proceeded by Ohtahara then it is highly likely

that the next progression of the seizure disorder will be SE-MISF

(Severe Epilepsy-with Multi Independent Spike Foci). Her last MRI

showed multiple spike foci activity with reduced seizure activity (a

common finding in SE-MISF) so it made me wonder if it's starting to

evolve and if maybe she might have had Ohtahara's in infancy that

wasn't caught.

Penny - Step Mom to nela, 14 years old, PMG with LGS

> > >

> > > I think it would be of interest to us all which Medication,

> what

> > dose,

> > > and age of child we all give this to. Along with

effectiveness

> and

> > > level of disability.

> > >

> > > Post to the group:

> > > age

> > > mild, mid or severe disability

> > > medicine(s) and Dose(s)

> > > effectiveness of the medicines and also medicines that were

not

> > > effective or maybe made things worst.

> > >

> > > My daughter is 5 (underweight), servere disability, on

Topamax

> 2 x

> > > 50mg, Kepra 2 x 2.5mls, Lamotrigine 2 x 10mg daily. We are

> still

> > > trying although seems 80% controlled.

> > > Increasing Kepra seemed to cause more seizures. Epilim

seemed

> only

> > > alittle effective so withdrawn.

> > >

> > > Look forward to reading all of your experiences.

> > >

> > > Dom, father to our lovely Chloe. (U.K.)

> > >

> >

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

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

> >

> > No virus found in this incoming message.

> > Checked by AVG Free Edition.

> > Version: 7.1.408 / Virus Database: 268.13.17/505 - Release

Date:

> 27/10/2006

> >

October 30, 2006

Hi Penny, that's what I read too. I don't think we would have caught

OS without the EEG and the uncontrolled seizures. Sophia's burst

suppression pattern only lasted a few days, and her seizures never

evolved to West. However, her EEG is a mess, with " lots of spikes

and sharps " as my doctor says. It sounds like the SE-MISF you

describe. My doc never uses technical terms, so I'm not sure if

there's a name for what he sees on the EEG. How is nela doing

at this point? Does she have seizure control, or are these advanced

age related disorders marked by intractable seizures as well? I

admit I stopped reading about future evolutions once we saw that we

made it past the stage for West's Syndrome to start.

> > > >

> > > > I think it would be of interest to us all which

Medication,

> > what

> > > dose,

> > > > and age of child we all give this to. Along with

> effectiveness

> > and

> > > > level of disability.

> > > >

> > > > Post to the group:

> > > > age

> > > > mild, mid or severe disability

> > > > medicine(s) and Dose(s)

> > > > effectiveness of the medicines and also medicines that

were

> not

> > > > effective or maybe made things worst.

> > > >

> > > > My daughter is 5 (underweight), servere disability, on

> Topamax

> > 2 x

> > > > 50mg, Kepra 2 x 2.5mls, Lamotrigine 2 x 10mg daily. We are

> > still

> > > > trying although seems 80% controlled.

> > > > Increasing Kepra seemed to cause more seizures. Epilim

> seemed

> > only

> > > > alittle effective so withdrawn.

> > > >

> > > > Look forward to reading all of your experiences.

> > > >

> > > > Dom, father to our lovely Chloe. (U.K.)

> > > >

> > >

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

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> --

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

> > >

> > > No virus found in this incoming message.

> > > Checked by AVG Free Edition.

> > > Version: 7.1.408 / Virus Database: 268.13.17/505 - Release

> Date:

> > 27/10/2006

> > >

October 30, 2006

,

Wow, from what I've heard (and seen) it's really great that Sophia didn't get

West's. I hope that means there is a good chance you will avoid LGS.

nela's December EEG was the same, lots of spikes but she showed little

seizure activity. I have read that this is common with SE-MISF. Even though

they call it Severe Epilepsy there are fewer seizures, which I would think would

be a good thing. We have noticed a big decline in Absence seizures, I swear

there was a time there before she turned 13 where she was in NCSE (non

convulsive status elipticus) all the time. She would be out of it and stare off

for days at a time. We haven't seen that in about a year now. It just seems

like her seizure disorder is changing. There is little information about

SE-MISF so I don't know if this is a good thing or bad thing to be going to.

lauranotdigangi wrote: