Zonisamide

I'm over 50 yrs old and have tried 17 different anti-seizure meds.  One them, Neurontin, left me extremely aggressive.  I've tried several more that left me anxious with no control.  Then the doctor prescribe Zonisamide.  It was one of the worst like Neurontin leaving me aggressive.  I'm off and feeling better.  Everybody reacts differently so I hope you don't hold my experience as an indicator of what is likely to happen.  But I would encourage you to be open-minded to the strong possibility of these negative effects.  I've read of several others who have had the same problem.  Don't treat your grandson like too much of a disabled one.  He needs to take chances if he is to live.  I greatly respect my parents for allowing me to do all the risky activities that they did.  I life of too much restriction will be depressing and lead to incentives to end it.  My freedom to live has given purpose despite the risks.  Thanks Mom and Dad.

Michael’s experience with anti epileptic medication is different than mine, while I have had some intolerable side-effects...mine were more fatigue or nausea related or the medications just were simply not effective. You mentioned that he has headaches. My neurologist prescribed me Topamax for both migraines and seizures and out of all the anti epileptic medications that I’ve taken, it’s been the most effective and I experience no side effects. I understand that some people complain about problems with thinking clearly when they take the medication, but if the medication is titrated slowly each week, this doesn’t seem to be as much of an issue. But everyone responds to medication differently and age and gender may play a role because of different hormones in how individuals respond to particular medications. Michael offered some insight from the perspective of a person who experienced epilepsy during childhood and how overprotective parenting can do more harm than good. I didn’t experience seizures until I was 19 years old and while I do think it’s important to understand what the diagnosis is and learn the need for safety so that you don’t take unnecessary risks and are responsible...he needs to learn how to face his fears and to have fun! 

Hi gmav, Thanks so much for posting, we understand this can be very upsetting & overwhelming to experience. Treatment varies for each individual, as Michael & Gianna shared about their experiences. It’s important that you continue follow-up with your grandson’s healthcare team to determine what individual treatment plan is best for him and if he experiences any changes in seizure types, frequency, side effects,behaviors and symptoms. For more information about Zonisamide, please visit: https://www.epilepsy.com/medications/zonisamideOur new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors' visits, and how to take control of seizures, seizure first aid & safety. Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy  While no activity is completely safe, restricting children from many activities can limit the child too much. Talk about each activity with your grandson’s healthcare team first. Most often, they can help figure out a way to let him continue to be active, participate and have fun. https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/about-kids/playing-sports-and-other-activities Our Kids Crew Program is free to join and is for kids ages 14 and under of all abilities, who want to learn, spread awareness, and make a difference. And have fun, too! Learn more about the Kids Crew Program and how to register by visiting:  https://www.epilepsy.com/make-difference/get-involved/kids-crewSometimes it's helpful to connect with other people who live with, or care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates  to find support groups, events, and programs in your community. Additionally you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org , where a trained information specialist can connect you to resources,  provide referrals and additional support.epilepsy.com/helpline