Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Behavior issues due to Epilepsy and medication

My son is started having seizures at 3.5 one night out of nowhere he had a grand Mal rushed him to the ER they checked his vital watched him and let us go home nothing else for a while then BOOM he had another one 2.5 months later same routine ER and home, then on his 4th birthday he had another one same routine ER & then home however 2 days later he started to have them back to back this time he was admitted in the hospital he had an MRI done nothing was found just monitoring him and after being on Keppra and still having 7-10 seizures a day the doctor started him on Depekoate 125mls 2x a day and then added Onfi 5mls 2x a day he was released after a 7 day stay, came home for 4 days and went in a family vacation he was fine gave his medication as usual on the way back from our vacation he had 3 seizures in the car, pulled over called 911 got him to a hospital he had 3 more so he was transferred to a children’s hospital in Georgia the only thing they did was increase his Onfi from 5mg to 10 mg 2x a day so he was fine for a week or so and started having 10-15 seizures a day he was admitted into the hospital again for 6 more days more test(MRI, Lumbar Puncture, genetic testing etc) started on more medication in addition to Depekoate & Onfi he was put on one other had a bad allergic reaction so that was a no go, he was given 2 others that did nothing for the seizures so the last and final medication was phenobarbital 11mls 2x a day so now he takes Depekoate Onfi & Phenobarbital. Boy here comes the problems he is very violent aggressive behavior rude, hard headed fighting biting kicking and does not listen to anyone it does not matter if he gets a spanking or not he will do something and say go get your belt like he likes it, before all of this he was a very sweet child did whatever you asked when you asked people would love to be around him. I have advised his neurologist of all of this and she has done nothing, example we have a dog he bites , kicks, punches the dog for no reason, he has days where he whines for 8 hours that day, he barely eats if he does it’s the same thing pancakes & sausage on a stick, rarely drinks he even looks different in the eyes, he is very pale. I’m just at my wits end how does a very healthy child end up like this out of nowhere without an explanation


Try to get your son to an

Try to get your son to an epilepsy specialist or "epileptologist".  I had similar problems all my life and doctors denied any link to epilepsy or the medications.  It seems the first to acknowledge any link was the epilepsy specialist I first saw in 1990.  The seizure focus could be contributing to the emotional problems.  If it is in the temporal lobes there will probably be behavioral issues.  I too am much calmer when off medications, but add too much medicine and I become violent.  No doctor has ever explained this to me.  Maybe it is a side effect of the drugs, but I don't think it is so simple.  I believe there is a region in the temporal lobes that regulates emotional response.  So add a drug that brings greater control of electrical activity in the brain and it may hamper the "regulator".  Also by see an epilepsy specialist you will be introduced to alternatives to drug therapy.  It may seem early to put your child through surgery for epilepsy but they are encouraging it sooner as the younger brain can recover and adapt faster to changes.  I'm very sorry and sad to read of your hardship trying to help your child who has such potential to love.  I'm also very sorry for the stress I've caused on my family for my loss of control.  I imagine your son feels the same.  Mike

brief comments - Emergency

brief comments - Emergency depts are not set up for epilepsy treatment unless it is to stop a non stop seizure (which is an emergency). It's quite valid to look at quality of life with respect to medications. If your doc isn't listening, get a new doc! Ideally a pediatric epileptologist because seeing an epileptologist is associated with better seizure control and needing fewer medications (overall, that still may mean multiple medications).

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

24/7 helpline