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Hi, my son had his first seizure at 6 months of age. It was chalked up to a febrile seizure and we moved on. When he was 11 months old, he had a cluster of seizures that resulted in us being medevaced from our small island town to a larger area hospital. His EEG came back normal and after 24 hours of observation we were sent to an area hotel to await follow up appointments. In the middle of the night my son had another seizure and we called an ambulance and ended up back in the Pediatric ICU. At this time, an MRI was also done and came back normal. We were advised to start medication and given emergency medication to ease our minds for our long flights home. We started him on Keppra and hated it. Hated it. After returning home and meeting with our clinic, we decided to wean him off medication. He began having seizures monthly, then weekly and finally we put him back on medication and decided to see a specialist from a larger hospital that was visiting our town. He was diagnosed with epilepsy on September 3, 2014 and we thought that was the start of a normal routine. We can treat epilepsy right? Wrong. We are now 13 months after our initial diagnosis and currently on FOUR antiepileptic drugs that do not control his seizure. By all outward appearances, he is a healthy,happy boy. We have not seen the dreaded side effects, cognitively he is excelling, developmental and speech are right on track, behavior is under control but we still have no seizure control. We are now weaning him off of Keppra, and Trileptal and trying a regimen of Depakote and Zonisamide. We have since the original diagnosis had two more EEG's which did show seizure activity and we now have an MRI, PET scan and video EEG monitoring scheduled. The possibility of surgery has been brought up by our neurologist as well now and I am terrified. Terrified. I am looking for success stories, personal struggles and positive support so I can give my poor husband break with the what if questions. Thanks all!

Comments

A question I would like you

Submitted by just_joe on Sat, 2015-10-17 - 17:29

A question I would like you to answer. What is controlled?It is a simple questionIs controlled by you meaning no seizure what so ever? Is controlled by a neurologist the exact thing? You might be surprised to know but the word controlled can have different meaning an yes a person can be controlled even if they are still having seizures now and then. While I do not have a child with epilepsy I do know about it from the person with epilepsy's point of view.You also should know it does take time to wean a person off a medication and onto the new medication, that it takes time. You see after a person stops taking a medication like a AED that medication takes 4-6 weeks after taking the last pill to get completely out of the body. Which is about the same time period that would show the side effects. The only other way I know of is staying in the hospital while the neurologists work on getting the therapeutic levels in your body set at levels they want them at. Understand there are many neurologists that may not work for John Hopkins or another major hospital. That foes not mean they aren't good. For all I know they may have contacted my neurologist. Since he has discussed neurology and epilepsy in hospitals. Oh and he has given lectures an had discussions all across this country all across this nation.

Amy Jo what if you had the

Submitted by just_joe on Sun, 2015-10-18 - 16:12

Amy Jo what if you had the best neurologist in the world that specialized in epilepsy and with everything he did you still had a seizure now and then. Is it controlled? To you NO, But to the neurologist that answer is CONTROLLED as best as it can be.You see I have a seizure every 8-14 days. With the newer medications that last a few seconds. There are no procedures I can go thru, Surgery is not an option because my scared brain tissue is in more than 1 lobe. I have taken all the medications listed I my Doc's office. Unless they have a new one coming out everything has already been tried. So are my seizures CONTROLLED???It is a simple answer. 3 letters. YES.I know there are many people that ant their children to be completely controlled. But I also know that Doc knew I wanted seizure free. He is the one that looked at all the possible procedures and surgery. He is the one that thought of the many different meds. He saw all the meds I had been on. If there was a new drug trial he wanted me in it just to see if it would help me get complete control.After living and dealing with epilepsy for 50+ years I know a little from the stand point of the epileptic.

How true it is. I am speaking

Submitted by just_joe on Mon, 2015-10-19 - 18:58

How true it is. I am speaking from a person who has had epilepsy for years point of view. There are many people who grow out of epilepsy. It happens daily. I also know that there are other procedures that can help. I know that surgery is also an option. Medications can control a persons seizures. I myself went 3+ years without a seizure. Doc and I were talking about weaning me off the meds. But then I had a seizure. All seizure medications work. A medication that works for one person may not for the next. The dosage may be too high or too low. Too much medication is just as bad as too little.With the advances of technology today many different things can be done.Amy Jo is speaking from a mothers point of view. I love mothers. They are always wanting the best for their kids. I wouldn't be here today if it weren't for a mothers prayer.You may become a very virtuous person because I know what I went thru and what it did to Mom.I will also tell you I do know there are people with epilepsy that have been seizure free for many years. My cousin is one of them. They were weaning her off meds and she had a seizure. They went back up the a level that they had just dropped hers to and stayed there. She has been seizure free for many years. She is just like the person next door. Has a wonderful family, drives, goes to exercise classes weekly, has her own business and drives her brother and sister crazy. So yes MISS a person can grow out of epilepsy. get complete control but still be on meds or be like me getting the best control I will ever have but still have a seizure lasting a few seconds now and then. But we are all living in a world that isn't perfect.I just want you to be a person that questionsIf you like the neurologist and he has been working with your child and answering your questions by all means keep a good relationship with him. I got more answers to my questions in a phone call that way. When you have a visit with the neurologist always ask questions. If the medication is 2 times a day those times need to be 12 hours apart. That way the therapeutic levels don't drop far enough to cause a break thru seizure.To tell you what can happen. As a teen most of my seizures were focal motor seizures. Today focal seizures look like an absence seizure. The person look like they are daydreaming. But my right hand would start to rise up. Once shoulder level I went into a convulsion. They weren't pretty and the asphalt would get dented ever now and then. (I was hard headed). After I was 20 the seizures changes some. Today the only seizures I have are focal seizures affecting my right hand. It feels weird or fingers are kind of numb. They last a few seconds. I know what's going on around me and can do everything after those few seconds. In other words I haven't had a convulsion since 1970. So relax. Do your self favor and it will help him and you and this site is the best place to start. Go to the help section. start with triggers. But also go to the M Epilepsy Diary. Watch the video and set one up. There are things to load such as his medications and types of seizures. But watch the video. Use the diary, Give his neurologist permission to bring it up and by doing that his neurologist can look at all the info in it and brig up the graphs. That alone could help with different medications, graphs and other procedures that might help him get your son seizure free.I do hope this helps and he does get seizure freeJoe

How true it is. I am speaking from a person who has had epilepsy for years point of view. There are many people who grow out of epilepsy. It happens daily. I also know that there are other procedures that can help. I know that surgery is also an option. Medications can control a persons seizures. I myself went 3+ years without a seizure. Doc and I were talking about weaning me off the meds. But then I had a seizure. All seizure medications work. A medication that works for one person may not for the  next. The dosage may be too high or too low. Too much medication is just as bad as too little.With the advances of technology today many different things can be done.Amy Jo is speaking from a mothers point of view. I love mothers. They are always wanting the best for their kids. I wouldn't be here today if it weren't for a mothers prayer.You may become a very virtuous person because I know what I went thru and what it did to Mom.I will also tell you I do know there are people with epilepsy that have been seizure free for many years. My cousin is one of them. They were weaning her off meds and she had a seizure. They went back up the a level that they had just dropped hers to and stayed there. She has been seizure free for many years. She is just like the person next door. Has a wonderful family, drives, goes to exercise classes weekly, has her own business and drives her brother and sister crazy. So yes MISS a person can grow out of epilepsy. get complete control but still be on meds or be like me getting the best control I will ever have but still have a seizure lasting a few seconds now and then. But we are all living in a world that isn't perfect.I just want you to be a person that questionsIf you like the neurologist and he has been working with your child and answering your questions by all means keep a good relationship with him. I got more answers to my questions in a phone call that way. When you have a visit with  the neurologist always ask questions. If the medication is 2 times a day those times need to be 12 hours apart. That way the therapeutic levels don't drop far enough to cause a break thru seizure.To tell you what can happen. As a teen most of my seizures were focal motor seizures. Today focal seizures look like an absence seizure. The person look like they are daydreaming. But my right hand would start to rise up. Once shoulder level I went into a convulsion. They weren't pretty and the asphalt would get dented ever now and then. (I was hard headed). After I was 20 the seizures changes some. Today the only seizures I have are focal seizures affecting my right hand. It feels weird or fingers are kind of numb. They last a few seconds. I know what's going on around me and can do everything after those few seconds. In other words I haven't had a convulsion since 1970. So relax. Do your self favor and it will help him and you and this site is the best place to start. Go to the help section. start with triggers. But also go to the M Epilepsy Diary. Watch the video and set one up. There are things to load such as his medications and types of seizures. But watch the video. Use the diary, Give his neurologist permission to bring it up and by doing that his neurologist can look at all the info in it and brig up the graphs. That alone could help with different medications, graphs and other procedures that might help him get your son seizure free.I do hope this helps and he does get seizure freeJoe

How true it is. I am speaking from a person who has had epilepsy for years point of view. There are many people who grow out of epilepsy. It happens daily. I also know that there are other procedures that can help. I know that surgery is also an option. Medications can control a persons seizures. I myself went 3+ years without a seizure. Doc and I were talking about weaning me off the meds. But then I had a seizure. All seizure medications work. A medication that works for one person may not for the next. The dosage may be too high or too low. Too much medication is just as bad as too little.With the advances of technology today many different things can be done.Amy Jo is speaking from a mothers point of view. I love mothers. They are always wanting the best for their kids. I wouldn't be here today if it weren't for a mothers prayer.You may become a very virtuous person because I know what I went thru and what it did to Mom.I will also tell you I do know there are people with epilepsy that have been seizure free for many years. My cousin is one of them. They were weaning her off meds and she had a seizure. They went back up the a level that they had just dropped hers to and stayed there. She has been seizure free for many years. She is just like the person next door. Has a wonderful family, drives, goes to exercise classes weekly, has her own business and drives her brother and sister crazy. So yes MISS a person can grow out of epilepsy. get complete control but still be on meds or be like me getting the best control I will ever have but still have a seizure lasting a few seconds now and then. But we are all living in a world that isn't perfect.I just want you to be a person that questionsIf you like the neurologist and he has been working with your child and answering your questions by all means keep a good relationship with him. I got more answers to my questions in a phone call that way. When you have a visit with the neurologist always ask questions. If the medication is 2 times a day those times need to be 12 hours apart. That way the therapeutic levels don't drop far enough to cause a break thru seizure.To tell you what can happen. As a teen most of my seizures were focal motor seizures. Today focal seizures look like an absence seizure. The person look like they are daydreaming. But my right hand would start to rise up. Once shoulder level I went into a convulsion. They weren't pretty and the asphalt would get dented ever now and then. (I was hard headed). After I was 20 the seizures changes some. Today the only seizures I have are focal seizures affecting my right hand. It feels weird or fingers are kind of numb. They last a few seconds. I know what's going on around me and can do everything after those few seconds. In other words I haven't had a convulsion since 1970. So relax. Do your self favor and it will help him and you and this site is the best place to start. Go to the help section. start with triggers. But also go to the M Epilepsy Diary. Watch the video and set one up. There are things to load such as his medications and types of seizures. But watch the video. Use the diary, Give his neurologist permission to bring it up and by doing that his neurologist can look at all the info in it and brig up the graphs. That alone could help with different medications, graphs and other procedures that might help him get your son seizure free.I do hope this helps and he does get seizure freeJoe