My daughter who just turned 5 was on Topamax for six days. It was heartbreaking to watch the life get sucked from her so we stopped it and may now try Lamictal. She always has rashes from eczema though so we are scared. My husband doesn't want any meds for her. We are currently seeking other opinions. She had 1 seizure last year and has had 3 this year so far - all but 1 was fever induced. Her EEGs showed epileptiform discharges. Neuro says she needs medication.

We are just not sure she truly needs meds if we make sure she is always safe and at 5 of course she wouldn't be driving or anything. Any advice or similiar situation?

Thanks in advance,
Jen

Hi! I just wanted to send a reply because my 21 month old daughter has epilepsy, she was diagnosed at 2 months. I know what you mean when you talk about watching the life being sucked out of your daughter. Those seizure meds all seem to keep her sedated all of the time, it's awful. She is almost 2 and yet developmentally she's just like a newborn. At one time she was having 17 grand mal seizures a day. Her nuerologist then decided to put a vagal nerve stimulator in her and it has done wonders for her seizures. She has still not started to develop yet, but in the last month she's has only had two seizures which is truly a miracle for us. I just wanted to let you know that there is hope and you will know what's best for your daughter. Let me know how things go and I wish you the best of luck.

I applaud you for seeking alternatives to meds, but one thing to keep in mind that your neuro may or may not have explained to you is that each time a child has a seizure, the likelyhood of having another increases. Neurons that fire together, wire together. Each seizure is helping create a network of neurons - if some start to misfire, they all misfire and you get a seizure. In addition, as the brain grows and develops, the neurons in the "seizure network" will make connections with more neurons, so that the network has a tendency to grow over time if seizure are not controlled somehow.

For example, my 5 year old nephew started out with partial complex seizures and epileptiform discharges in only one part of his brain. 15 seizures in 9 months later, and now he's has epileptiform discharges throughout his brain and generalized complex seizures. Some of his seizures were fever related as well, so we have to take every little cold very seriously and make sure he gets enough sleep at all times. He suffered bleeding in his brain at birth and was on phenobarbitol for the first 18 months of his life. He really perked up and started talking after he went off the pheno, so we'll never know how much it slowed down his development. (He has CP as well, but his intelligence is normal.)

Try to get the opinion of an epileptologist - they are neuros who have done fellowships in epilepsy. You can try to find an individual doctor, or see if you can go to a comprehensive epilepsy center.

See what you can do to get your daughter on the lowest effective dose on the meds with the least side effects for her - every kid is different. I understand how it can seem like the cure is worse than the seizures, but uncontrolled seizures can have very bad effects on the developing brain, not to mention quality of life.

EDIT: One more thing: my nephew just went on depakote and the side effects were horrible at first - drooling, sleepy, just not himself. After one month he got much better, its as if his body adjusted to the meds. I'm not sure how common this is, but there is hope that your child can be "ok" on meds.

Children have something called the Ketogenic Diet, that I have read people trying to do instead of medication. Neurologists I think like to do it with medication at the same time. Either way it has to be monitored by a doctor, but medication may be optional. I am not sure, I was diagnosed at 24 years old.
I have just bought a book that deals with "Treating Epilepsy Naturally". I don't know if I can say the name of the author, but I am interested in doing the same thing that you are, stopping medication. I have not had a seizure in two years this October. I am playing with the idea... I cannot say for sure if I would do it, but I would like to. There is no harm after all in finding out what would be involved whether or not it is done. Also depending on what type of seizure it is, children have a possibility of growing out of them. I have juvenile myoclonic seizures, but I've been told by the neurologist that I will not be able to stop taking medication ever. I see that as a challenge. If I were able to say on this board the whole story of me since 1975 you would hear a fantastic story
Kitty