Can children with TLE outgrow seizures and get off meds?

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My son began having seizures at 4. He had one very long, tonic clonic seizure. Normal EEG at that point and no recurrence. At 7 he began again. After his first very long Grand Mal seizure he was diagnosed and put on meds but the neurologist was a general neuro and his seizures just kept increasing. After 6 weeks and one day of 5 seizures and Todd's paralysis, we were at the ER where he had yet another seizure and was admitted. They did a work up and referred us to a pediatric nero who saved him, I think.

The general neuro was not medicating him enough. He was afraid of over medicating him, but he was not giving enough. After that day his seizures seemed to stop. He did have a few nocturnal seizures and we increased his dose. All was well, except he got more agressive and behavior problems increased. He had a breakthrough seizure and bad behavior problems so we changed from Oxcarbamazine to Lacmictal. Lamictal is great except he is having lots of partial seizures lately.

I just wonder if he will ever outgrow this. They say he has Left TLE but no sclerosis. His EEG was crazy when he had it in the hospital a year and a half ago. We are repeating the EEG. He is having trouble in school and with friends and I just want hope that one day he can outgrow this and be normal. He is 8. We are older parents and he is such a handful (not really compared to other kids, but in our family) and his siblings don't want to have to care for him for life. Any experience? Any hope?

Thanks for any help!

Comments

What most people do not think

Submitted by Anonymous on Tue, 2015-01-27 - 12:41

What most people do not think about is the fact that too much medications is just as bad as too little. If his seizures were reduced in the number of them and they increased then the neurolosgist needed to be contacted. Medications and dosages are different with all people. As the person grown the ammount may need to be changed. I had to have my dosages changed 4-5 times in a short period of time. That time period was when I was growing and changing from a kid to a teen. I grew from a 85 lb and 4'8" kid to a 135 lb 5'6" teen in less then a year. As hormones change it too affects the dosages too. As for growing out of epilepsy??? Some people do. My cousin did and has led a happy life has been married and worked in several jobs.There are others that are seizure free that still take medications. Then there are others like me who have seizures at times but the number of seizures in small and the seizures are seconds long. If you talked to me and my neurologist both of us would say my epilepsy is controlled. I would still like to be seizure free and Doc knows it. It all depends on the way a person looks at CONTROL. I haven't had a convulsive seizure since 1970. The number of seizures is minimul. The seizures I have most people would know nothing about since I have had them while talking to people and in a group without them knowing I had one. The way a person learns also determines how they are treated and what they will do. In other words Person Responsability. Siblings are siblings. I have them and at times we fought and other times we cared what happened to us. But that was many years ago. We talk at times but I get no questions about my epilepsy. Just like I don't get information about their ailments. At times I do get asked about my medications and how they are working and I tell them. I had Lary (older brother ) call and ask questions once and they were good questions. The reason was his friends daughter had some seizures and his friend was trying to take care of her and knew nothing about medications, tests and other things. Larry told his friend abot me and said he would ask me some things. So yes at times my siblings ask but they never had to actually take care of me. Oh and with Larry I herd him telling Mom I was having anothe spaz attack. Yes at time joking about it does relieve pressure and we did laugh many times. As for trouble in school and trouble with friends you might want to look at the side effects that are with the medications he is taking. Oh and breakthru seizures can happen. If he is to take meds 2 times a day then those times should be 12 hours apart unless the doctor states otherwise. If taken at 7am and 7 pm fine if the meds at night are not taken until 9-10pm than those 2-3 hour delay can cause a breakthru seizures because the levels didn't stay the ammount that the doctor wanted them to. I learned that the hard way. Which was by having seizures because the levels were not where they needed to be and kept. I hope this helps and he gets the assistance he needs. Joe

What most people do not think about is the fact that too much medications is just as bad as too little. If his seizures were reduced in the number of them and they increased then the neurolosgist needed to be contacted. Medications and dosages are different with all people. As the person grown the ammount may need to be changed. I had to have my dosages changed 4-5 times in a short period of time. That time period was when I was growing and changing from a kid to a teen. I grew from a 85 lb and 4'8" kid to a 135 lb 5'6" teen in less then a year. As hormones change it too affects the dosages too. As for growing out of epilepsy??? Some people do. My cousin did and has led a happy life has been married and worked in several jobs.There are others that are seizure free that still take medications. Then there are others like me who have seizures at times but the number of seizures in small and the seizures are seconds long. If you talked to me and my neurologist both of us would say my epilepsy is controlled. I would still like to be seizure free and Doc knows it. It all depends on the way a person looks at CONTROL. I haven't had a convulsive seizure since 1970. The number of seizures is minimul. The seizures I have most people would know nothing about since I have had them while talking to people and in a group without them knowing I had one. The way a person learns also determines how they are treated and what they will do. In other words Person Responsability. Siblings are siblings. I have them and at times we fought and other times we cared what happened to us. But that was many years ago. We talk at times but I get no questions about my epilepsy. Just like I don't get information about their ailments. At times I do get asked about my medications and how they are working and I tell them. I had Lary (older brother ) call and ask questions once and they were good questions. The reason was his friends daughter had some seizures and his friend was trying to take care of her and knew nothing about medications, tests and other things. Larry told his friend abot me and said he would ask me some things. So yes at times my siblings ask but they never had to actually take care of me. Oh and with Larry I herd him telling Mom I was having anothe spaz attack. Yes at time joking about it does relieve pressure and we did laugh many times. As for trouble in school and trouble with friends you might want to look at the side effects that are with the medications he is taking. Oh and breakthru seizures can happen. If he is to take meds 2 times a day then those times should be 12 hours apart unless the doctor states otherwise. If taken at 7am and 7 pm fine if the meds at night are not taken until 9-10pm than those 2-3 hour delay can cause a breakthru seizures because the levels didn't stay the ammount that the doctor wanted them to. I learned that the hard way. Which was by having seizures because the levels were not where they needed to be and kept. I hope this helps and he gets the assistance he needs. Joe 

What most people do not think about is the fact that too much medications is just as bad as too little. If his seizures were reduced in the number of them and they increased then the neurolosgist needed to be contacted. Medications and dosages are different with all people. As the person grown the ammount may need to be changed. I had to have my dosages changed 4-5 times in a short period of time. That time period was when I was growing and changing from a kid to a teen. I grew from a 85 lb and 4'8" kid to a 135 lb 5'6" teen in less then a year. As hormones change it too affects the dosages too. As for growing out of epilepsy??? Some people do. My cousin did and has led a happy life has been married and worked in several jobs.There are others that are seizure free that still take medications. Then there are others like me who have seizures at times but the number of seizures in small and the seizures are seconds long. If you talked to me and my neurologist both of us would say my epilepsy is controlled. I would still like to be seizure free and Doc knows it. It all depends on the way a person looks at CONTROL. I haven't had a convulsive seizure since 1970. The number of seizures is minimul. The seizures I have most people would know nothing about since I have had them while talking to people and in a group without them knowing I had one. The way a person learns also determines how they are treated and what they will do. In other words Person Responsability. Siblings are siblings. I have them and at times we fought and other times we cared what happened to us. But that was many years ago. We talk at times but I get no questions about my epilepsy. Just like I don't get information about their ailments. At times I do get asked about my medications and how they are working and I tell them. I had Lary (older brother ) call and ask questions once and they were good questions. The reason was his friends daughter had some seizures and his friend was trying to take care of her and knew nothing about medications, tests and other things. Larry told his friend abot me and said he would ask me some things. So yes at times my siblings ask but they never had to actually take care of me. Oh and with Larry I herd him telling Mom I was having anothe spaz attack. Yes at time joking about it does relieve pressure and we did laugh many times. As for trouble in school and trouble with friends you might want to look at the side effects that are with the medications he is taking. Oh and breakthru seizures can happen. If he is to take meds 2 times a day then those times should be 12 hours apart unless the doctor states otherwise. If taken at 7am and 7 pm fine if the meds at night are not taken until 9-10pm than those 2-3 hour delay can cause a breakthru seizures because the levels didn't stay the ammount that the doctor wanted them to. I learned that the hard way. Which was by having seizures because the levels were not where they needed to be and kept. I hope this helps and he gets the assistance he needs. Joe

Hi Amy Jo,My ped neuro does

Submitted by ridgeimagephotography@gmail.com on Sat, 2015-03-07 - 07:54

Hi Amy Jo,My ped neuro does know about the increased partials. He increased his lamictal and it took about tworeatweeks and struggling through fog and sleepiness, but it finally has a made a huge difference in the partials and his mood. He is such a depressed little guy. Things I read say that is common with left temporal lobe epilepsy. He did have a grand mal this week,(first in 6 months) but after the post-ictal period he seemed like a new kid. He was so energetic and happy. It was weird. I'm a little worried about thet seizure. My main concern for him is not so much the seizures but that he is losing cognitive function. He made As in kindergarten and 1st grade and now he can't remember what an "H" looks like. He reads on 4.5 grade level but can't spell AT ALL. He can do math but struggles to get the work done. He doesn't WANT to do it, so I think some of it (how much is the questions) is bad attitude which needs to be handled totally differently than mental incapability. He has developed sensory issues since the seizures started (age 4 then nothing til 7 but probably was having partials) and he is very akward socially. We are seeing a psychologist and doing social skills classes. He can't take ADD meds because it causes LOTS of partials. He threaetens self harm and pushes and hits kids at school- terrible impulse control- (psychologist evaluated him and said he wasn't serious about self harm) and the psychiatrist can't see him until August. I made the appt in December. He needs help for his mental state and his behavior, all of which have deteriorated over the last 2 years or so and are due to the left TLE, I am sure. He is being tested for special ed at school and we are getting a 504 plan in place. That's the only positive thing, although I hate it for him. But if it helps, that's what we need. I think I"m doing all I can. Would you see a epi... specialist doctor for epilepsy if this was your child? His neuro is good, Could we do better? Is a ketogenic diet or atkins modified diet worth a try since the seizures seem to be under better control? He had a new eeg recently and it showed lost of eliptoform discharges, spikes and waves and slowing in the left temporal lobe. We don't have any scarring or malformations.