epilepsy isn't real to my son

[redbirdgirl]

My son, 17, was diagnosed 2 1/2 years ago. My son takes his meds. diligently, goes to bed on time (his only trigger is sleep deprivation), makes good decisions, but I feel he only does this because he knows I am watching out for him, to double check him, etc. Epilepsy does not seem real to him because he has no other symptoms, no auras, no recollection of seizures (grand mal) or postictal phases. It concerns me how it will be for him when he goes off to college.

 

[masterjen]

Does your son see an epileptologist at an epilepsy center? Many centers have one or more clinical nurses that may help your son understand and accept his epilepsy. Often centers have psychologists and psychiatrists associated with them as well, in other words they are experienced in dealing with epilepsy. Being that your son is a teenager, it may be that he won't listen to you but might listen to an outside person who has knowledge and experience in dealing with what he is having to cope with and accept.

 

[redbirdgirl]

Yes, we go to Mayo, but that epleptologist seems to want to dismiss us as my son's case is not severe, only seizure every 4-5 months. He wants to refer us to a local neurologist, which there isn't one in our town that deals with epilepsy. My son is not being rebellious about anything, just thinking it isn't going to happen again, that he is fine.

 

[masterjen]

Then before your son is discharged, mention your concerns if you haven't already, and state that you would like your son seen by a counselor/nurse who can help him accept and understand what is going on.

 

[Kgartner]

My daughter was diagnosed last fall at 15 and it was the same for her until she actually started having seizures again. In November she told me she "barely had epilepsy" (is that like being "sort of pregnant"?). I think this is very very difficult for them to accept, particularly if they feel fine and are not having any symptoms.

A few weeks ago she missed one dose of medication while out of the country on a service trip and had a seizure 2 1/2 hours later. HUGE wake up call - she'd missed doses from time to time before then with no issues whatsoever. Unfortunately things have been somewhat unstable for her since then (not sure why), so now denial is out of the question. The last couple of days I have finally started to exhale a bit and hope that we are now on the right track. But her relationship to her epilepsy has shifted 100% - which is good but also makes me a little sad.

Keep in mind, however, that "feeling fine and not having any symptoms" is exactly the outcome we all want! It may take him making a mistake and suffering the consequences for him to really "get it" - or he may just continue to make good choices. Does he have the type of epilepsy that he may outgrow, or is likely that he will be dealing with this his whole life? Either way, as parents at a certain point we need to let them "own" this disease and manage themselves - and that includes the possibility that they may make mistakes.

You are doing all the right things, and so is he! And from one epilepsy Mom to another - huge hugs!!! I know how hard this is, and how much your heart aches.

 

[Belinda5000]

Someone needs to talk to your son.Have you let him try to take his meds with a pill box when your not watching them.When I was 17 my meds were kept in a certain place and I was never ask if I took my or I was never watched, I've been taken meds since I was two yrs old.It seems that because he's controlled by meds he meds to talk to others who have epilepsy and not be so it's no big deal.

 

[arnie]

I would suggest that you stop watching out for him and double-checking him now. He is almost out of the house and on his own and it will be good for him to start taking responsibility for his own health care. As others have said, being symptom-free is the goal here, and it's probably only because he is on meds that he IS doing well. Maybe have him read some of the posts here, or PM one of us. I'd say that many of us have decided we didn't need meds any more, and have paid the price with seizures! Best of luck to you and your son.

 

[Dolores]

I'm actually thinking on a different track than arnie. If your son will do something because he knows you are watching then why not use that to get him into habits. Like keeping a log of his medications, blood levels and any changes. I use excel to do this but he can pick his favorite app that makes it easy for him. Also, have him keep a log of his seizures so he has a history of what happened when and possibly he can identify triggers.

I was diagnosed with epilepsy when I was 10. I had a grand mal every year or so. I do remember one day at college having multiple seizures but that was unusual. So, while I thought I accepted that I had epilepsy, it wasn't until 20 years later that I realized I really hadn't. My case just wasn't as drastic as other's deal with and my doctor (a neurosurgeon) took my case as a favor to my previous doctor. There wasn't a lot of information around back then and only having to deal with it once a year made it easy for me to ignore. My mom worried more than I did.

Then came the internet and I was finally able to easily do research on it. And my brother discussed medications & blood levels with me because of his cancer. I'll never forget him telling me that I was the only one who really knew how I felt, what was going on in my body. Doctors may understand medical issues but there are so many variations that only I can really know if something is working for me including being able to handle the side-effects. Luckily my current doctor talks with me about my medications. He's my gp and deals with my epilepsy meds as they have controlled my seizures for over a decade and we are just managing the side effects.

I remember the night I was leaving for England as part of my job - I would be there a year - and my mom said "But who is going to remind you to take your medications?" I told her that I guess I was going to have to do that by myself. And I did. And I had a great time even though I did have a seizure - I found out that I had to deal with it and I could.

Your son will figure it all out especially once he has to. And I know you will continue to worry as that is what mom's do. But I know you will also see him mature and take life a bit more seriously (including his epilepsy) - and that will give you much joy.

 

[mes2350]

My situation was/is similar to your son's. My first seizure happened at 18, same trigger, grand mals as well. I went 3 years between my first and second seizure(at 21). I just got over that "It won't happen again, I'm fine" phase last year and accepted it.
That second seizure really brought things into perspective about how much the meds can actually do for you. Sometimes it takes a slip up for that to hit home. Feel free to PM. [emoji4]

 

[MAB]

My son, 17, was diagnosed 2 1/2 years ago. My son takes his meds. diligently, goes to bed on time (his only trigger is sleep deprivation), makes good decisions, but I feel he only does this because he knows I am watching out for him, to double check him, etc. Epilepsy does not seem real to him because he has no other symptoms, no auras, no recollection of seizures (grand mal) or postictal phases. It concerns me how it will be for him when he goes off to college.

Has he lost his driver's license? That should have brought to his attention the seriousness of seizures.

I am blessed to have only partial seizures so they don't effect my life as much as other people. (If one can say they are blessed to have seizures.)

 

[arnie]

I like what Dolores said about tracking seizures. Here is the best way I have found to do that. It's made a world of difference for me and is probably the reason I have been seizure-free for two months now. I wish I would have known about it a long time ago.

https://seizuretracker.com

Cheers!

 

[redbirdgirl]

Thank you for your responses. It gives me something to think on. He does have a driver's license, but he has never driven alone. He is not bitter about this fact; he just knows it is something that he has to live with. I appreciate all of you taking time to respond.

 

[bighealey]

I went into denial until I talked my Dr into a real low dose then missed a med one time. I had a seizure right off. Well - well now I am paying the piper with restrictions and meds and the diagnosis which I still don't like. I even said take me off the f)&*^)&^ing meds and let's see, if I don't seize then I am not, if I do then I am. Well I am. I always had to learn the hard way, I am stupid that way.........................

Today I am 3 months seizure free and no I am not in denial anymore. I hope your son does not do what I did.

Peace Tracy

 

[MAB]

I went into denial until I talked my Dr into a real low dose then missed a med one time. I had a seizure right off. Well - well now I am paying the piper with restrictions and meds and the diagnosis which I still don't like. I even said take me off the f)&*^)&^ing meds and let's see, if I don't seize then I am not, if I do then I am. Well I am. I always had to learn the hard way, I am stupid that way.........................

Today I am 3 months seizure free and no I am not in denial anymore. I hope your son does not do what I did.

Peace Tracy

Maybe we all go through a denial at some point before we accept the truth. I was grateful to finally find out what was wrong with me. Since they are sensory partial seizures and difficult for me to describe them exactly it took awhile to finally figure things out. Once it was figured out I immediately started on meds and started feeling better so I was resistant to increasing the meds as prescribed. After a very long status partial seizure I have increased the meds as I should have before it happened. I also have alarms set on 2 different phones so that I don't miss any doses. I carry a several day supply in my purse just in case I'm not home when it's time for my meds. I even carry a couple rescue pills just in case a seizure goes on a little too long for my comfort.

 

[ctlnld]

I started having myoclonic & tonic clonics before going off to college & like your son, I didn't treat it very seriously until I kept waking up in the backs of ambulances.

My mom was always very worried about me, though unfortunately it's only now looking back I can really appreciate her being there for me- your son is very lucky to have someone who cares as much as you do.

Looking back, being able to talk to others around my age at the time who were going through similar things probably would've brought home the reality a lot more quickly than learning the hard way. There might even be an epilepsy support group on your son's campus!

 

[daviscy60]

As far as E being real to a person. I had my first run of seizures at 19. That year u had started taking BC pills. When I had first few sz's I was alone recently married and had moved far from home. I was young knew nothing about E or SZ's. After spending one Sunday I guess having multiple CP SZ's went to bed that night had TC. Went to ER they sent me to neuro. Started on meds. I had been told I had a seizure disorder. This has been 30+ years and thru many different episodes. Wasn't until last year I actually saw where a DR wrote that my diagnosis was E. Spent years on Dilantin and as long as I would remember to take it no issues. Last year was switched to keppra. My seizures seem to be so well controlled on meds that at times it really does not seem to be real to me. So I must say I understand where your son is coming from. I sometimes wonder if my problem was worse then maybe would feel more like I had a problem. Reading about others on here makes me thankful that my problem is not all that bad but again makes me at times wonder if my problem is real.