20 month old with intractible epilepsy

[Guest guest]

Hi everyone,

I often read posts here, but this is my first time writing.

My son has Down Syndrome and intractible epilepsy, he is 20 months old.

We have tried clonapin, vigabatrin, zonegram, Modified Atkins Diet, and

now prednisone, with no luck.

We are currently on day 6 of prednisone, but his seizures have just

gotten worse.

Has anyone been in this place? Our neuro wants to keep going through a

list of meds, but they seem to aggravate the condition rather than help.

Next in line is Topamax, then Lamictil. I do not like to keep trying

meds, and I am fearful of the side effects.

Anyone have experience with Topamax or Lamictil? I welcome good and

bad stories.

Thank you!

[Guest guest]

Hello,

 

I am a 44 year old who out of the blue developed Epilepsy at age 41.  I have

only had to try Topamax.  I have had Grandmal Seizures.  Several tests where

they find nothing.  When I am on my meds faithfully I have no Seizures.  I had

to do a 5 day hospital test to see if they can find where the Seizures are

coming from.  I had to be off Meds 2 days b4 hospital and during 5 day at

hospital.  I had partial Seizure in Sleep first day in hospital.  That was all. 

Other than that for seven months with no Seizures, thanks to Topamex.  I take

300mg a day. 

From: Hartman <hartmandrea@...>

Subject: [ ] 20 month old with intractible epilepsy

Date: Sunday, October 26, 2008, 12:43 PM

Hi everyone,

I often read posts here, but this is my first time writing.

My son has Down Syndrome and intractible epilepsy, he is 20 months old.

We have tried clonapin, vigabatrin, zonegram, Modified Atkins Diet, and

now prednisone, with no luck.

We are currently on day 6 of prednisone, but his seizures have just

gotten worse.

Has anyone been in this place? Our neuro wants to keep going through a

list of meds, but they seem to aggravate the condition rather than help.

Next in line is Topamax, then Lamictil. I do not like to keep trying

meds, and I am fearful of the side effects.

Anyone have experience with Topamax or Lamictil? I welcome good and

bad stories.

Thank you!

[Guest guest]

Hi,

My son now 22 also is intractable and has been since this all started when he

was six yrs old due to a stroke shortly after birth.We have tried every drug

with no success including topamax and lamictal. With regard to lamictal it did

stop his grand mals for which i am grateful. It also has been the dug that has

had the least side effects. Unfortunatedly even afer two brain resections

still remains intractable. He has partial seizures in cluster form that

necessitate Diastat to stop them. This happens all too often.

My son's case is really bad and I think that you should keep on trying to find

the right recipe for your son. But be very aware of all the changes that the

drugs produce. You are very correct in thinking that the drugs make the seizures

worse or morph them into other types but there are so many drugs that you have

not tried. Please make sure that you are seeing an epitologist (neuro

specializing in seizures)and that you are going to a center that specializies in

Epilepsy. It can make all the difference.

God bless you both and I sincerely that you find the right recipe for your dear

son. I know how hard and scary this all is but don't ever give up.

Roni

________________________________

From: Deborah <debbie_49345@...>

Sent: Monday, October 27, 2008 8:43:27 PM

Subject: Re: [ ] 20 month old with intractible epilepsy

Hello,

 

I am a 44 year old who out of the blue developed Epilepsy at age 41.  I have

only had to try Topamax.  I have had Grandmal Seizures.  Several tests where

they find nothing.  When I am on my meds faithfully I have no Seizures.  I had

to do a 5 day hospital test to see if they can find where the Seizures are

coming from.  I had to be off Meds 2 days b4 hospital and during 5 day at

hospital.  I had partial Seizure in Sleep first day in hospital.  That was all. 

Other than that for seven months with no Seizures, thanks to Topamex.  I take

300mg a day. 

From: Hartman <hartmandrea@ hotmail.com>

Subject: [ ] 20 month old with intractible epilepsy

Date: Sunday, October 26, 2008, 12:43 PM

Hi everyone,

I often read posts here, but this is my first time writing.

My son has Down Syndrome and intractible epilepsy, he is 20 months old.

We have tried clonapin, vigabatrin, zonegram, Modified Atkins Diet, and

now prednisone, with no luck.

We are currently on day 6 of prednisone, but his seizures have just

gotten worse.

Has anyone been in this place? Our neuro wants to keep going through a

list of meds, but they seem to aggravate the condition rather than help.

Next in line is Topamax, then Lamictil. I do not like to keep trying

meds, and I am fearful of the side effects.

Anyone have experience with Topamax or Lamictil? I welcome good and

bad stories.

Thank you!

[Guest guest]

--I myself has taken Topamax. They use it for many different things

mine was Epilepsy & Migraines they thought they could treat both at

once, Well...... NO, it did not happen I turned into a Witch. That is

useing it lightly I will never use it again, I was grumpy to all,

and tried to cut off my ex- boyfreind private parts off (not for

real) But wanted to. I too had a Dr that wanted to go down the line

and try many differnt things it took them about 3 to 4 years to get

my meds straight. I am finally straight with all meds. PLUS have

Blood thinners and High blood pressure pills and

Hydroxychloroquine,Don't ask the diease is even longer.I don't know

about someone that is 20 Months old cause I am 35 now have been

fighting this for a while now. I have a wonderful Dr Who helps me

with just about anything I need, or having a problem he is there.

hope this info helps and god bless you and your family.

- In , " Hartman "

<hartmandrea@...> wrote:

>

> Hi everyone,

>

> I often read posts here, but this is my first time writing.

> My son has Down Syndrome and intractible epilepsy, he is 20 months

old.

>

> We have tried clonapin, vigabatrin, zonegram, Modified Atkins Diet,

and

> now prednisone, with no luck.

>

> We are currently on day 6 of prednisone, but his seizures have just

> gotten worse.

>

> Has anyone been in this place? Our neuro wants to keep going

through a

> list of meds, but they seem to aggravate the condition rather than

help.

> Next in line is Topamax, then Lamictil. I do not like to keep

trying

> meds, and I am fearful of the side effects.

>

> Anyone have experience with Topamax or Lamictil? I welcome good

and

> bad stories.

>

> Thank you!

>

>