Partial Seizures with no improvement on medication

CDC funded page

Not a CDC funded Page

My 8 year old son just started randomly having seizures about 1 1/2 years ago. The seizures just occur in his eyes (they twitch an move to the left). We took him to see a pediatric neurologist when it first started happening. They did an EEG & MRI. The EEG confirmed that he is having seizures but the MRI came back "normal". They prescribed him Trileptal and after a few months of being on it, it showed no improvement. Most of the time when he has these seizures, he is completely alert and aware of what is happening. He can tells us when it starts and when it is over and he can talk to us through out it. He just says his vision becomes blurry and has to stop what hes doing. These usually last for about 15-30 seconds. Over the last few months, his seizures seem to be more frequent and becoming slightly different occasionally. Sometimes now along with the eye movements, his head locks up to left and he gets tired afterwards. He is still conscious but doesnt always respond to us when we try talking to him during this. We took him in to another doctor, had all of the tests redone (this time with a 24hr EEG) and his MRI came back normal again. He is now on Keppra and that isnt working at all either and it is making him kind of "down" or slightly depressed. He has about 8-10 seizures a day. Most of the time he bounces right back to his normal self. I do not want him on this medication anymore. the doctors dont seem to have any answers to what is causing the seizures and why they are getting worse. I am not sure what to do. Any advice?

Comments

You posted he was switched to

Submitted by just_joe on Wed, 2016-03-30 - 14:57

You posted he was switched to keppra but didn't post if he was weaned of the other medication or how long he had been on keppra. Just so you'll know seizure medications are not like other medications. The dosages are set and need to be taken as instructed. If 2 ties a day those times need to be 12 hours apart. Side effects do happen but once his body gets used to the medication they generally go away. That time period could be 4-6 weeks after starting it. The medication is building up to the therapeutic levels the neurologist wants. If the change was recent then your son has both medication working in him at the same time. Too much medication is just as bad as too little. which might be why you are seeing more seizures but I can't say more because I am not a doctor and don't know when the medication change took place.Just so you'll know I had been in a drug study (new medications to stop seizures) and once I was taken off I had no problems. A month later I started having a few more seizures. I thought it might have been the generic I was taking. I had a visit with Doc and he knows me well. I had researched the medications I had taken for 2 years. He informed me it wasn't the generic. The drug I had been taking wasn't a placebo and it had been keeping me from having seizures. we added vimpat to the keppra and the seizure count is down even farther. It took 6-8 weeks for that medication to get completely out of my system.Call his neurologist and discuss this issue with him/her. If the seizures are different then that needs to be looked at too. A person can have more then one type of seizure. I also have seizures that I can understand things and hear and talk in but it isn't my eyes. Focal seizures start in one area of the brain. which controls the other side of the body. My right hand feels weird so I know when I have them. I just can't control that hand for a few seconds.I hope this helps and your son gets seizure freeP.S. Keppra is the best seizure medication I have ever used. It not only shortened the number of seizure I was having it also shortened the time in them. It has ferwe side effects then the other medications I have used. I have used almost every medication on the list the neurologists have.Joe

You posted he was switched to keppra but didn't post if he was weaned of the other medication or how long he had been on keppra. Just so you'll know seizure medications are not like other medications. The dosages are set and need to be taken as instructed. If 2 ties a day those times need to be 12 hours apart. Side effects do happen but once his body gets used to the medication they generally go away. That time period could be 4-6 weeks after starting it. The medication is building up to the therapeutic levels the neurologist wants. If the change was recent then your son has both medication working  in him at the same time. Too much medication is just as bad as too little. which might be why you are seeing more seizures but I can't say more because I am not a doctor and don't know when the medication change took place.Just so you'll know I had been in a drug study (new medications to stop seizures) and once I was taken off I had no problems. A month later I started having a few more seizures. I thought it might have been the generic I was taking. I had a visit with Doc and he knows me well. I had researched the medications I had taken for 2 years. He informed me it wasn't the generic. The drug I had been taking wasn't a placebo and it had been keeping me from having seizures. we added vimpat to the keppra and the seizure count is down even farther. It took 6-8 weeks for that medication to get completely out of my system.Call his neurologist and discuss this issue with him/her. If the seizures are different then that needs to be looked at too. A person can have more then one type of seizure. I also have seizures that I can understand things and hear and talk in but it isn't my eyes. Focal seizures start in one area of the brain. which controls the other side of the body. My right hand feels weird so I know when I have them. I just can't control that hand for a few seconds.I hope this helps and your son gets seizure freeP.S. Keppra is the best seizure medication I have ever used. It not only shortened the number of seizure I was having it also shortened the time in them. It has ferwe side effects then the other medications I have used. I have used almost every medication on the list the neurologists have.Joe

You posted he was switched to keppra but didn't post if he was weaned of the other medication or how long he had been on keppra. Just so you'll know seizure medications are not like other medications. The dosages are set and need to be taken as instructed. If 2 ties a day those times need to be 12 hours apart. Side effects do happen but once his body gets used to the medication they generally go away. That time period could be 4-6 weeks after starting it. The medication is building up to the therapeutic levels the neurologist wants. If the change was recent then your son has both medication working in him at the same time. Too much medication is just as bad as too little. which might be why you are seeing more seizures but I can't say more because I am not a doctor and don't know when the medication change took place.Just so you'll know I had been in a drug study (new medications to stop seizures) and once I was taken off I had no problems. A month later I started having a few more seizures. I thought it might have been the generic I was taking. I had a visit with Doc and he knows me well. I had researched the medications I had taken for 2 years. He informed me it wasn't the generic. The drug I had been taking wasn't a placebo and it had been keeping me from having seizures. we added vimpat to the keppra and the seizure count is down even farther. It took 6-8 weeks for that medication to get completely out of my system.Call his neurologist and discuss this issue with him/her. If the seizures are different then that needs to be looked at too. A person can have more then one type of seizure. I also have seizures that I can understand things and hear and talk in but it isn't my eyes. Focal seizures start in one area of the brain. which controls the other side of the body. My right hand feels weird so I know when I have them. I just can't control that hand for a few seconds.I hope this helps and your son gets seizure freeP.S. Keppra is the best seizure medication I have ever used. It not only shortened the number of seizure I was having it also shortened the time in them. It has ferwe side effects then the other medications I have used. I have used almost every medication on the list the neurologists have.Joe

Amr Jo is right call the

Submitted by just_joe on Fri, 2016-04-01 - 17:31

Amr Jo is right call the neurologist if he is having more seizures and tell him any changes in them Adjustments can be made. If he has gained any weight then that too also changes the way the medications works. When I was a teen my medications were changed 4-5 times in about a 9 months period of time. I grew close to 12 inches and gained about 50 lbs.. and the dosages were increased. It kept the seizures down to about where they were before that change in becoming a teenager