Struggling with 19 year old who has epilepsy

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Hello,

My son was diagnosed with epilepsy at the age of 6 years old, which was very hard for me to handle and accept at first. As we started the doctor visits, the dr had me hopeful he would grow out of them, as time passed and they weren't going away, I started to become very depressed as I didn't want to accept the fact that he would be living with this for the rest of his life as I would hate to see him go through it....Years passed, he became a teen and that is when it seemed to really get worse, especially through highschool, but through the passing years, we would educate ourselfs on epilepsy and everything that would come with it....We had seemed to be doing good and on a fair path for success. Once he got into his later teens it became a big struggle! I was in and out of the schools for meetings for bad behavior, not excelling in school and just straight defiancy. I've been through my ups and downs with him, and still doing so.

Right now it's struggle with him remembering his meds, getting him through high school, educating him on his epilepsy and the importance of his self care/health. He will not respect any house rules, stay active, or try to even move in a positive direction. I've tried getting him involved in our Epilepsy foundation here in our home state and that is a struggle. I have had many positive conversations with him about his epilepsy and assured him he can do anything his heart desires if he puts his mind to it....I clearly know that it's not an easy life to live with something like this, but I also know that it's still possible to live a normal happy life if you are wanting it.

I know I am not alone, but I just feel like I am the end of the rope.

Any parents that are in my same situation, please any stories you have to share would be appreciated.

Comments

I am not a parent but I do

Submitted by just_joe on Mon, 2015-10-19 - 17:15

I am not a parent but I do know it is hard to deal with epilepsy. Today it is much better then when I was diagnosed. Oh yes I rebelled. I wanted to get away from the house. You have done pretty good since you have tried to teach him about his epilepsy.For all you know he could still get seizure free.It takes time and working to get the neurologists to work with you going that directionIf he goes in to an apt and just answers the doctors questions then the doc will think everything is OK and your son will get sent home and still have the seizures at the same number as he has been having.Has he been takin his meds at the same tie every day? If 2 times a day are those times 12 hours apart? That alone can stop some seizures since if those things aren't done they can cause a break thru seizure. I didn't realize the difference until I was at the neurologists office myself.For every question they asked me I had one for them. Is this medication the best med for my kind of seizure?Do we need to increase or decrease th dosage?Is there a better medications with fewer side effects that can control my seizures better?If not is there a medication that can be coupled (added) with my medication which could give me better control?Are there any procedures that could help?Simple questions. If your son starts asking questions like these the neurologist will see that he wants better control and really wants results he hasn't gotten.By doing the above and keeping a good relationship with my neurologists the number of seizures I was having went down. With the same questions the docs replacement looked for more results. I will have to break in a new neurologist since Doc retired recently, But She will get questioned just like my others were.So far today I have reduced the number of seizures down to a seizure every 8-14 days, The time in those seizures has changes from 5-15 minutes to a few seconds. The time to get back to normal was changed also. Back when they were longer it took 15-45 minutes to get back to normal. Today it is a few seconds. I could have a seizure while talking-to you and you wouldn't know I had one. Go research the famous people that had epilepsy. use google or bing. Do show him the names. He is no different then those people.I have done many different things in my life. It took understanding and common sense to get farther in life but I did get there.For me a seizure every now and then is nothing since it is now seconds long. I have been living and dealing with epilepsy for 50+ yearsTo give you and your son a little more to think about. When I was diagnosed in the 1950"s many people with epilepsy were still being put away in homes. "Out of sight out of mind". In the 1970"s there were still some states that would not let people with epilepsy get a marriage license. I hope you get more responses an I do hope your son gets the assistance he needsJoeOh and I do have a cousin that did have epilepsy. It started when she was going into her teens. She had some problems. Today she still takes meds but she hasn't had a seizure in years. She is married, drives, has her own business (branches off of the medical field) and loves her family. Goes to the beach and swims, fishes and about everything a regular person does. It took her time too but it can be accomplished.

I am not a parent but I do know it is hard to deal with epilepsy. Today it is much better then when I was diagnosed. Oh yes I rebelled. I wanted to get away from the house. You have done pretty good since you have tried to teach him about his epilepsy.For all you know he could still get seizure free.It takes time and working to get the neurologists to work with you going that directionIf he goes in to an apt and just answers the doctors questions then the doc will think everything is OK and your son will get sent home and still have the seizures at the same number as he has been having.Has he been takin his meds at the same tie every day? If 2 times a day are those times 12 hours apart? That alone can stop some seizures since if those things aren't done they can cause a break thru seizure.  I didn't realize the difference until I was at the neurologists office myself.For every question they asked me I had one for them. Is this medication the best med for my kind of seizure?Do we need to increase or decrease th dosage?Is there a better medications with fewer side effects that can control my seizures better?If not is there a medication that can be coupled (added) with my medication which could give me better control?Are there any procedures that could help?Simple questions. If your son starts asking questions like these the neurologist will see that he wants better control and really wants results he hasn't gotten.By doing the above and keeping a good relationship with my neurologists the number of seizures I was having went down. With the same questions the docs replacement looked for more results. I will have to break in a new neurologist since Doc retired recently, But She will get questioned just like my others were.So far today I have reduced the number of seizures down to a seizure every 8-14 days, The time in those seizures has changes from 5-15 minutes to a few seconds. The time to get back to normal was changed also. Back when they were longer it took 15-45 minutes to get back to normal. Today it is a few seconds. I could have a seizure while talking-to you and you wouldn't know I had one. Go research the famous people that had epilepsy. use google or bing. Do show him the names. He is no different then those people.I have done many different things in my life. It took understanding and common sense to get farther in life but I did get there.For me a seizure every now and then is nothing since it is now seconds long. I have been living and dealing with epilepsy for 50+ yearsTo give you and your son a little more to think about. When I was diagnosed in the 1950"s many people with epilepsy were still being put away in homes. "Out of sight out of mind". In the 1970"s there were still some states that would not let people with epilepsy get a marriage license. I hope you get more responses an I do hope your son gets the assistance he needsJoeOh and I do have a cousin that did have epilepsy. It started when she was going into her teens. She had some problems. Today she still takes meds but she hasn't had a seizure in years. She is married, drives, has her own business (branches off of the medical field) and loves her family. Goes to the beach and swims, fishes and about everything a regular person does. It took her time too but it can be accomplished.

I am not a parent but I do know it is hard to deal with epilepsy. Today it is much better then when I was diagnosed. Oh yes I rebelled. I wanted to get away from the house. You have done pretty good since you have tried to teach him about his epilepsy.For all you know he could still get seizure free.It takes time and working to get the neurologists to work with you going that directionIf he goes in to an apt and just answers the doctors questions then the doc will think everything is OK and your son will get sent home and still have the seizures at the same number as he has been having.Has he been takin his meds at the same tie every day? If 2 times a day are those times 12 hours apart? That alone can stop some seizures since if those things aren't done they can cause a break thru seizure. I didn't realize the difference until I was at the neurologists office myself.For every question they asked me I had one for them. Is this medication the best med for my kind of seizure?Do we need to increase or decrease th dosage?Is there a better medications with fewer side effects that can control my seizures better?If not is there a medication that can be coupled (added) with my medication which could give me better control?Are there any procedures that could help?Simple questions. If your son starts asking questions like these the neurologist will see that he wants better control and really wants results he hasn't gotten.By doing the above and keeping a good relationship with my neurologists the number of seizures I was having went down. With the same questions the docs replacement looked for more results. I will have to break in a new neurologist since Doc retired recently, But She will get questioned just like my others were.So far today I have reduced the number of seizures down to a seizure every 8-14 days, The time in those seizures has changes from 5-15 minutes to a few seconds. The time to get back to normal was changed also. Back when they were longer it took 15-45 minutes to get back to normal. Today it is a few seconds. I could have a seizure while talking-to you and you wouldn't know I had one. Go research the famous people that had epilepsy. use google or bing. Do show him the names. He is no different then those people.I have done many different things in my life. It took understanding and common sense to get farther in life but I did get there.For me a seizure every now and then is nothing since it is now seconds long. I have been living and dealing with epilepsy for 50+ yearsTo give you and your son a little more to think about. When I was diagnosed in the 1950"s many people with epilepsy were still being put away in homes. "Out of sight out of mind". In the 1970"s there were still some states that would not let people with epilepsy get a marriage license. I hope you get more responses an I do hope your son gets the assistance he needsJoeOh and I do have a cousin that did have epilepsy. It started when she was going into her teens. She had some problems. Today she still takes meds but she hasn't had a seizure in years. She is married, drives, has her own business (branches off of the medical field) and loves her family. Goes to the beach and swims, fishes and about everything a regular person does. It took her time too but it can be accomplished.

The defiance can be a side

Submitted by kristicain12@gmail.com on Tue, 2015-10-20 - 00:40

The defiance can be a side effect of medication. It seems that neither his seizures or his side effects are in a very good place. My only advice would be that it is never too late for a second opinion. Even if his epilepsy is truly intractable there can be other options to help manage it. I had to be very aggressive about fighting for better treatment options with my daughter's "intractable" epilepsy that is now well controlled and going on five years seizure free. Fortunately her epilepsy journey has been short lived but the recovery process will be much longer. We made several trips out of state until we found doctors with the wherewithal to puzzle out her unique case. I cannot advise on dealing with a very long term experience. I have friends locally that tried other doctors out of state but grew to accept their son's seizures that never really improved with time. He is now in his early 20's and developed epilepsy at the age of 2. The stress has been unbearable at times and has had dark consequences for the family. My only wish for them would be if they could have taken our advice to see our daughter's doctors. They probably could not have helped with the extreme brain damage that he suffered this late in the game but I know they could have brought him to a better place with his seizure control. My mantra will always be patient advocacy and finding the right neuro.