My son's epilepsy

[purwono_purwosumarto]

Hi, I am purwono from indonesia. I hope i can be one of you in this forum.

I have a son starting to have a epilipsy at 12 yr old. He had generalized seizures at waking up only. It never happened during his activity or his being awake. We took him to a doctor and he got single treatment of tegretol cr containing carbanazepine 200 gr,one tablet daily and after several days the siezure stopped.
After 3 years of not having seizure we decided to reduce the doses. Now he has been taking l00 mg every other day for 1 year. so far so good. Can anyone of you answer my question whether the treatment can be stopped completely now ? because i am worried of the effect of the long term treatment of carbamazepine. Thanks to all of you

 

[RobinN]

Welcome Purwono,
You are definitely one of us now. I also have a child with seizures.
I believe the answer to your question is... no one really knows. It sounds like he is on his way to being seizure free and med free. I worry too about the long term effects of the medicine.

 

[Bernard]

Hi purwono_purwosumarto, welcome to the forum. :hello:

Stopping drugs when seizures have been controlled for years

 

[speber]

Hello Purwono!

You and your son are among friends here. You will find many people with similar situations and very good information for you!
I hope you find an alternate solution to the anti-epileptic drugs(AED's) for your son...please let us know how your quest goes!
:rock:

 

[purwono_purwosumarto]

Thanks alot for ur reply

Dear friends,

I am happy to have thoughtful and helpful friends.

I have just read the references that mr. Bernard gave me. It is very helpful. I printed the article of stopping drugs when seizure hv bn controlled.

I want to know more about agranulocytosis and aplastic anemia that have been associated with tegretol/carbamazepine. Maybe i should cont. a doctor/neurologist for that.

Thanks again.till then. :hi5:

 

[Elisa]

Hello,
I don't know if this helps at all but it is my understand. If you are going to get aplastic anemia from a AED it will most likely happen within the first 3 to 6 months of taking the drug. I took Felbatol for years which is well know for aplastic anemia and this is what I have been told many times.

 

[Birdbomb]

Welcome to the forum, purwono_purwosumarto!

How does your son accept his epilepsy? I understand it's kind of hard for adolesents to deal with it. Was he born with it?

 

[brain]

:hello: Purwono!

Glad to have you here! And you're not
alone with concerns of AED's. Majority
of us are! But I agree with Birdy's post
was he born with it or how long has he
had that hideous E?

 

[execwife2002]

Hi Purwono,
i too have a 19 yr. old son who has nocturnal seizures since the age of 12 1/2. He hasn't had a day seizure in months, but still has nocturnal seizures. He's on Depakote ER, Topamax, and Lyrica. He did stop caffeine, splenda, and all other sugar substitutes. He is taking magnesium at night too. He did go 2 1/2 months without a seizure. When he returns from OHio he will go 100% on a Gluten Free Diet. He started the diet, but the doctors in Ohio want him to go back to his "old" ways so nothing is masked for the tests (just in case). Makes me wonder if the doctors do know that the gluten free diet can play a role in all of this.
Welcome.
Marian

 

[Zoe]

Can anyone of you answer my question whether the treatment can be stopped completely now ? because i am worried of the effect of the long term treatment of carbamazepine. Thanks to all of you

Hi Purwono,
Welcome to the group! If a person is free of seizures for about two years, some specialists then recommend withdrawing the patient from the seizure medication. It can be very dangerous to just stop taking a medication. It is better to talk with your son's doctor about taking your son off of the medication. Your pharmacist should also have information on how this can be done safely. When a person has been on the drugs for a while and is seizure free it may be that their body has corrected whatever problem led to the seizures developing. I hope this will be true for you son.

 

[purwono_purwosumarto]

Thanks again the so many reponds on my question. They are worth considering. I am a little shocked to read that epilepsy might cause sudden death.

I have no idea how my son got E. No, he didnot get it since he was born. He got it around 11-12 yr. He told me something that i did not understand when he complained about he had when waking up. Until when i saw her fall down when walking out of his room after waking up in the morning.Right then i knew that he had one.

I suspected that the game,playstation,(sorry to ps),might cause it. When just watching his friends play,and there was a flash on the screen,he felt he was about to get the seizure.Maybe there is some radiation reflecting from the screen. Also remembering the japanese game called pokemon that hit some kids in Japan some time ago.

Or it might be a fall when my son was a toddler and the E appeared later. I really donot know.

Things that make me feel concerned are that my son's sight is worsening-wearing negative lense glasses now,and also he sleeps more,meaning that his stamina is declining. Are those the effect of the med (carbamazepine) ?

Thanks again and i feel happy in this forum.till then

 

[Bernard]

I suspected that the game,playstation,(sorry to ps),might cause it. When just watching his friends play,and there was a flash on the screen,he felt he was about to get the seizure.Maybe there is some radiation reflecting from the screen. Also remembering the japanese game called pokemon that hit some kids in Japan some time ago.

Photosentivitity can trigger a seizure in many people, but I don't think it *causes* the underlying seizure disorder.

 

[Birdbomb]

The medications can cause a person to be drowsey, effect vision. It slows down the electrical impulses in the brain, so just about everything is effected.