Medication after a first time seizure? - Epilepsy Message Board

Delmarmom · 08-07-2007, 11:08 PM

My 13 year old son had a grand mal seizure last week with no prior history of seizures. The experience was extremely frightening and we are so thankful he did not get hurt. His EEG has a few abnormal spikes and waves, so the Neurologist has started him on a very small dosage of Topamax 25mg gradually ramping eventually to 100 mg over 2 weeks. I am not sure if I am doing the right thing by putting him on medication, and I don't know how to find the answer. The Dr. says his chance of having another seizure are high, and given the fact he loves high risk activities, surfing, football, skiing....he would be in danger if he was not on medication. He is starting a new school for 7th grade in one month. Football practice starts next week, his whole life is ahead of him. What if the medication makes him feel so poor that he can't do all these things that make him happy? But the option of having a seizure in the middle of a wave, or a football game is not a good option either. Do we just continue along as planned and hope that we get the medication right very soon? Or do we tell him that life is on "pause" right now and stop all his activities to figure out the effect this medicine has on him? A 13 year old boy who is entering puberty is not very patient or mature in dealing with this situation. Right now, the doctors and we (his parents) are the bad guys and he has not taken any responsibility to help figure this out...he is just mad at the situation. Does anyone have some thoughts on what we should do, both on the medication front and the issue in how to best communicate with him about this?

TopamaxKillsMe · 08-08-2007, 07:59 PM

For some people Topamax isn't a problem but for me and for MANY others (I have researched this) it has been hell. I would definitely consider the MANY side effects that go along with Topamax. It is a very serious drug. It slowed down my thinking considerably and I wasn't able to work steadily for over 2 years. Because of insurance issues and the fact that my doctor was an advocate of the drug and gave me samples, got me on their patient assistance program, I stayed on it. I am just now getting off it and I cannot tell you how relieved I am. The time I've been on Topamax has been the WORST TWO YEARS OF MY LIFE which is why I feel compelled to post and get the word out to people regarding my experience.

When I first started having seizures at the age of 21, my doctor put me on 400 mg of dilantin. It worked great for me for 16 years. The only real side effect I had was that my gums swelled, then it suddenly stopped working and that's when I had to find an alternative drug (the Topamax).

Good luck.

Travis from MN · 08-08-2007, 08:21 PM

For activities I'd say see how his seizures go FIRST. I disliked not being able to participate in school sports due to my seizures. In my case I was very well controlled, so playing would not have been an issue for me. Being held back from sports made me feel like I had a chain limiting me.

I understand the thought for caution, so just SEE how the seizures are for frequency and control. The district as well may take issue with it if they learn of it, it could become a liability for them. HOWEVER the district cannot prevent students with disabilities from playing sports. If they try to thats discrimination.

It may end up being a wait and see ordeal. See if the medication suggested works. If not, then it's move on to another medication. You never know in advance IF the med will work or not. I wish we did or we would have gone through a lot less trial and errors.

Now as for telling the school or not... Give the Nurse information and contact #'s **if you see fit**. It's up to you if you wish to inform the teachers. Thats always a judgement call of the parents. However the nurse should have the AM dose on hand just in case it is missed for any student on any type of meds.

--Travis

TopamaxKillsMe · 08-11-2007, 08:44 AM

Some people have no problem with it but understand some people (like me) have had terrible problems. When I think of a child on this stuff, I get angry.

There is actually a class action suit against them now because of the plethora of adverse side effects that so many people have experienced (kidney stones, glaucoma, hypothermia, cognitive memory loss, etc.) This is the #1 AED but it also has the most side effects.

neurowreck · 08-12-2007, 11:04 AM

As far as his taking responsibility for his disorder, connect it to things he likes to do- if he doesn't take the meds, go to appointments, etc, then no video games, time with friends, etc- there's a risk of video induced seizures without medication, and being around friends may be good, but not if he's unsafe without meds...... it's up to him.

If Topamax is giving you nightmares, ask the doc for something else. Let him/her know your concerns and ask for a more tested/used/older medication- those still work....

I'm on exclusively 'older' meds (Tegretol, Klonopin, and Neurontin- though that is more for another disorder, but is an anticonvulsant). I don't get side effects from those at all.