How is it living with childhood epilepsy

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Hi there, My 4yr old was diagnosed of frontal lobe epilepsy in March this year. It has been a rough ride since then. We have seen a healthy, happy, intelligent boy transform into a highly impulsive and possessive kid with evident mood swings and memory issues. We have no idea why this happened aND the doctors say it doesn't matter as they have ruled out all the life threatening causes and at this point whatever the cause the management protocol would be the same. While he did have good seizure control for 4 months after diagnosis, he has lately ended up with several breakthrough seizures. We have been experimenting with his medication doses and drug combos but it just seems to worsen. How many here have had 8 to 10 focal seizures each day. How did it affect your cognition and ability to keep up with school? His seizures last for 20 to 30 secs during which he laughs or giggles uncontrollably. As he is just 4yrs and in preschool, people usually don't find it odd and just ignore his seizures assuming it as him being goofy. But lately I can see that he is always grumpy, gets upset easily, when happy gets way too impulsive and starts hitting or jumping around and talking way too much. We are worried about his future. What will happen if he continues like this... will he end up with major learning difficulties.. will he be disabled or mentally challenged? Has anyone here had seizures since childhood which continked all life? How are you doing with life today... is it possible for my son to have a normal successful life? Please someone share your experiences.

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We have no idea why this

Submitted by just_joe on Sat, 2016-10-29 - 11:22

We have no idea why this happened good seizure control for 4 months after diagnosis How did it affect your cognition and ability to keep up with school? You are worried about something you can not control. Just like my Mom was. YOUR SON IS NO DIFFERENT THEN THE BOY NEXT DOOR. They get up and do what they want. Yes you have to make sure he takes his meds at the same time every day. (that too can cause breakthrough seizures) But the boy next door may have an issue you are not aware of.. You never know. Heart ailments, diabetes and other ailments or disorders do affect lots of people.Has anyone here had seizures since childhood which continued all life? 10-12 is still childhood which is when I started having seizures that were unknown and not even thought about. I was 13 when I had my Grand Mal seizure. My diagnosis came at 14. But I was taking meds from about the age if 12 1/2. I have gone long periods of time without a seizure. but I would have one. Then months before the next. I learned how to live with having a seizure now and then and work with my neurologists to find or look at all medications, procedures, diets and even checked out surgery. SO yes I have done well and I will never be completely seizure free. But knowing your neurologist and always asking questions and keeping a good relationship with them has done wonders. The seizures I was having used to last about 5 minutes. The time to get back to normal was an additional 15-45 minutes and sometimes longer. Those same seizures today are now2-5 seconds. With no get back to normal time. I could have a seizure right in front of you and you would know nothing about it. While taking to my GP I had one and my answer to his questions had a delay in it. HE had seen me in seizures in his office before and had asked me about changing to the best neurologist at Baylor. When I asked him what he thought that delay was and told him the delay was what my seizures are today. His response was "Now I see why you didn't want to change your neurologist. I informed him I might be needing a new one since Doc retired the end of july.is it possible for my son to have a normal successful life? YES he is no different then anybody else. Personally I have worked in many different fields and was a part owner of a small business. It all depends on how they accept their epilepsy and learns how to live and deal with it. The stigma has been around for well over a thousand years..Do yourself a favor.... Use your tool bar and just type in famous people with epilepsyHere's what wiki says https://en.wikipedia.org/wiki/List_of_people_with_epilepsy

We have no idea why this happened   good seizure control for 4 months after diagnosis How did it affect your cognition and ability to keep up with school? You are worried about something you can not control. Just like my Mom was. YOUR SON IS NO DIFFERENT THEN THE BOY NEXT DOOR. They get up and do what they want. Yes you have to make sure he takes his meds at the same time every day. (that too can cause breakthrough seizures) But the boy next door may have an issue you are not aware of.. You never know. Heart ailments, diabetes and other ailments or disorders do affect lots of people.Has anyone here had seizures since childhood which continued all life?   10-12 is still childhood which is when I started having seizures that were unknown and not even thought about. I was 13 when I had my Grand  Mal seizure. My diagnosis came at 14. But I was taking meds from about the age if 12 1/2. I have gone long periods of time without a seizure. but I would have one. Then months before the next. I learned how to live with having a seizure now and then and work with my neurologists to find or look at all medications, procedures, diets and even checked out surgery. SO yes I have done well and I will never be completely seizure free. But knowing your neurologist and always asking questions  and keeping a good relationship with them has done wonders. The seizures I was having used to last about 5 minutes. The time to get back to normal was an additional 15-45 minutes and sometimes longer. Those same seizures today are now2-5 seconds. With no get back to normal time. I could have a seizure right in front of you and you would know nothing about it. While taking to my GP I had one and my answer to his questions had a delay in it. HE had seen me in seizures in his office before and had asked me about changing to the best neurologist at Baylor. When I asked him what he thought that delay was and told him the delay was what my seizures are today. His  response was "Now I see why you didn't want to change your neurologist. I informed him I might be needing a new one since Doc retired the end of july.is it possible for my son to have a normal successful life?  YES he is no different then anybody else. Personally I have worked in many different fields and was a part owner of a small business. It all depends on how they accept their epilepsy and learns how to live and deal with it. The stigma has been around for well over a thousand years..Do yourself a favor.... Use your tool bar and just type in            famous people with epilepsyHere's what wiki says    https://en.wikipedia.org/wiki/List_of_people_with_epilepsy

We have no idea why this happened good seizure control for 4 months after diagnosis How did it affect your cognition and ability to keep up with school? You are worried about something you can not control. Just like my Mom was. YOUR SON IS NO DIFFERENT THEN THE BOY NEXT DOOR. They get up and do what they want. Yes you have to make sure he takes his meds at the same time every day. (that too can cause breakthrough seizures) But the boy next door may have an issue you are not aware of.. You never know. Heart ailments, diabetes and other ailments or disorders do affect lots of people.Has anyone here had seizures since childhood which continued all life? 10-12 is still childhood which is when I started having seizures that were unknown and not even thought about. I was 13 when I had my Grand Mal seizure. My diagnosis came at 14. But I was taking meds from about the age if 12 1/2. I have gone long periods of time without a seizure. but I would have one. Then months before the next. I learned how to live with having a seizure now and then and work with my neurologists to find or look at all medications, procedures, diets and even checked out surgery. SO yes I have done well and I will never be completely seizure free. But knowing your neurologist and always asking questions and keeping a good relationship with them has done wonders. The seizures I was having used to last about 5 minutes. The time to get back to normal was an additional 15-45 minutes and sometimes longer. Those same seizures today are now2-5 seconds. With no get back to normal time. I could have a seizure right in front of you and you would know nothing about it. While taking to my GP I had one and my answer to his questions had a delay in it. HE had seen me in seizures in his office before and had asked me about changing to the best neurologist at Baylor. When I asked him what he thought that delay was and told him the delay was what my seizures are today. His response was "Now I see why you didn't want to change your neurologist. I informed him I might be needing a new one since Doc retired the end of july.is it possible for my son to have a normal successful life? YES he is no different then anybody else. Personally I have worked in many different fields and was a part owner of a small business. It all depends on how they accept their epilepsy and learns how to live and deal with it. The stigma has been around for well over a thousand years..Do yourself a favor.... Use your tool bar and just type in famous people with epilepsyHere's what wiki says https://en.wikipedia.org/wiki/List_of_people_with_epilepsy

How is it living with childhood epilepsy

Comments

We have no idea why this

Submitted by just_joe on Sat, 2016-10-29 - 11:22

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