Helping husband understand the seriousness of a seizure

[ilovetorun]

This might be a bit long, but here goes. Our son has simple partial seizures. He's had 2 since April. We are about 80% sure that its benign rolandic epilepsy which he will outgrow, but since the EEG didn't show the expected pattern for BRE, our pediatrician doens't feel comfortable saying that he'll outgrow it just yet. He's been seizure free for almost 12 weeks. With school starting again, he prescribed diastat to keep at school as part of his safety plan since his school is 20 min away from a hospital.

I have tried to talk to my husband about the seizures at different times and he just never took it very seriously. Never asked any questions at all and kind of blew it off. I had talked to him several times about the diastat and he would just say "do you really think he needs it" or something like that. Last night, I told him I was going to the pharmacy and see how much it was going to be. When they said it was $100, I went ahead and did it because I was braced for much worse. I got home and he got mad that I filled it without consulting him. It wasn't the cost at all, finances aren't an issue thank God. It was that he felt I made a decision without including him and he didnt' think it was necessary. I asked him what the heck he thought I was going to do at the pharmacy and he said that he thought I was going to refill the nasonex prescription, which I also did.

So we had a long "discussion" about the seizures. He said that he just doesn't understand what the big deal is since "he isn't on the floor flopping around" I explained to him that the physical manifestations of a seizure have to do with where in the brain they are occurring, not how serious they are. I explained that when the whole brain is involved, you 'flop on the floor' but if only parts are involved, you have other symptoms.

He said that he really never knew any of that. That irritated me because I have tried and tried to talk to him about it and he seems very disintersted in discussing it. I told him that, to quote Rod Stewart, there ain't no point in talking when there's nobody listening, so I just quit talking and took care of it by myself. He said that he kind of tuned me out when I was FREAKING OUT about the MRI because I was terrified that they were going to find a brain tumor. We currently know a child with a brain tumor, so that, combined with some uncanny timing of his seizures did lead me to not be in the best of mental states while we waited for the MRI. So I guess he thought I was being a drama queen and just blew off the seizures as no big deal and that I was over-reacting and getting the diastat was just one more over-reaction.

I asked him why he thought that they ordered the EEG and MRI. He said that he wondered the same thing since it was just "twitching" and not a "serious seizure" After an hour of discussion, I think he understands that any seizure is serious and that it can be a medical emergency if it doesn't stop. We're hoping his epilepsy is BRE and won't be a big deal, but we simply can't depend on that diagnosis at this point. It shocked me that he really thought this and did not look into it further. It's not like he can't get online an look for himself or open his mouth and ask the Dr. himself. He's usually not like this. He's involved. He shows interest in every aspect of their lives. He's a good dad. How could he seriously be so clueless where this is concerned? Does anyone have any words of wisdom for me? Thanks for letting me vent!!!

 

[Rae1889]

Well to be entire honest, I am sort of on your husbands side.

While seizures are serious, you really do need to pay more to tonic clonic seizures (where you "flop" around). Simple partial seizures are not that dangerous unless one lasts 10-15 minutes long. Even having multiples a day is not enough excuse to use diastat. I think that you would have a better chance just calling an ambulance for a longer simple partial. as most of the time, awareness is still retained, and you need to use some discretion when choosing to use it to avoid embarrasment and pain.

A simple partial seizure typically lasts (for me at least) about a minute to 4 minutes. They can be a tiny twitch, an audio or visual hallucination. smells or tastes. etc. So your son may not even be telling you when he is having one, because he might not know it is one. Things like Deja Vu are also considered simple partial seizures.

Everyone who suffers from SP pretty much starts in this stage, while regular medication is building itself up in their system. There really is no worry on safety etc. He should be treated like a normal child and it would probably make him feel less embarrased and reserved about his seizures if you didnt make a big deal out of them. Later on down the line, it could make him feel embarrassed or defective if he thinks that having seizures is something that is frowned upon, or makes him a permanent child.

I dont know how old he is, but you might want to have a chat with him and your husband and any siblings and immediate relatives. Make it known to them that him having seizures is NOT a big deal, and doesnt make him any less of a person and doesnt change what he can and cannot do (although some supervision may be required such as swimming etc, especially if he starts having tonic clonics.)

Baths should no longer be allowed, showers only and at a decent temperature, and set a time limit on them. guys usually take 10 minutes to shower and if he isnt out by then knock and ask if he is alright. Then give him 10 more minutes. Let him keep his normal privacy, and if he has a cell phone, text him every so often asking if he is ok. Make sure he eats and drinks properly, and gets adequate sleep and exercise. Things like this can trigger seizures, as well as some allergies.

Simple partial seizures are pretty manageable in day to day life, so I wouldnt make too much of a deal about it. HAving a child with epilepsy is tough, and its going to take time for you to both cope with it and get into a routine. Just remember that it will also be very hard on him. Both now and in the future. (such as relationships, driving, jobs, having his own kids etc) So the more everyone around is aware of how things work, but keeps things to a normal life, the better for everyone.

 

[Fedup]

Sorry you feel this way ilovetorun, but I am partly on your Husbands side, the reason is, about 4 yrs ago I was sitting down at the table with my mother - there was no one else around - all of a sudden the topic turned to me having epilepsy/attacks, this took me by surpise, my mother started telling me about when I was first diagnoised with epilepsy ( by a vet - this is not funny, a little, wof wof ) and the row I caused between her and my dad, this realy took me off guard, so I said carry on, why would you say that to your mother anyway my mother thought that my father did not take what was happening serious, so there was a big row, my father never spoke about what was happening (me having epilepsy) and seemed to ignore it and left everything to her and my mother started to think she done something wrong ( she still does at times ) about a year later things start to get on top of my mother and low and behold my father came to the rescue, he had taken it seriously from the begining, his way of dealing with it was not talking about it ( not very helpful ) when my mother sat down and asked him why, he said you are all the time getting angery and everything is about " our child", he does have a name and he has a sister ( I have 2 sisters and 1 brother ) and we do not seem to be in the picture, so to shorten things, after a talk about the family and my epilepsy
things changed and she did not have to do everything on her own, although I do remember my father cheeking my mother once or twice, like when he told her "not to put him in a glasshouse " because if the glass brakes he could get cut with the glass, so what I am saying is maybe if you approach it from a family point of view when talking to your husband you might get a differant reaction. Hope this was some help.

 

[soehls]

We are in the same boat. My hubby feels the same way as yours. Your feelings are legitimate, there is no right or wrong way to feel when you hear your child has epilepsy. Yes, worry is a big part of the feeling. My hubby and pediatrician also told me its no big deal. Really? Is it normal to have seizures? If its no big deal, why did they give the disorder a name? Why do testing? It IS a big deal, our feelings about our children are real. Of course we should not overreact, or treat them like Fedup says, putting them in a bubble or a glass house. But I do agree we should look out for their safety and push and be their medical advocate because they cant be. Hang in there, people on this board are so sweet and helpful. Come here for support. Hugs

 

[no.guru]

I don't agree with your husband. The seriousness of a seizure isn't measured by outward signs. To say so is to misunderstand seizures in general. If I wave my arms more wildly in one seizure than in another then that means the first seizure is more severe than the second? Please.

You are correct to focus on what's going on inside the brain - and the rest of the body.

I've had tonic-clonic and partial seizures for years. My partials typically last about 20 minutes and don't progress to T/Cs unless I move around. The only way my partial seizures are less serious than T/Cs is that they are nocturnal and I'm conscious, so I don't have to worry about them happening at any random time. At least not yet. But to be awakened in the middle of the night and then have to suffer through 20 minutes of pain without knowing what the seizure is going to do this time? Given a choice, I'd take unconsciousness every time.

The partials I have typically involve muscle contractions within the body that no one else but me knows about. On at least two occasions, a partial seizure/migraine have caused my heart to go into atrial fibrillation, which required a hospital stay and medication to correct. I don't and have never had cardiovascular problems otherwise.

It's possible to be overprotective or to overreact, of course, and you wouldn't want to treat your son differently unless you know there are specific situations he should avoid. I don't know you and I haven't seen your reactions, but based on what you've said here your son is lucky to have you.

 

[Rae1889]

I agree that some people need medical advocates. But once the child reaches a certain afe (say around 13) They should start having say in their care. If they dont like a medications side effects or what times to take them, then you should be willing to comprimise. After all, its his quality of life and seizures that matter, not how you feel about them.

I know that may sound a little harsh, but one of the things that bothers me about my own mother is that she doesnt understand what its like to live with seizures every day or at all. She seems to think she is doing the right things, but she doesnt understand all the consequences behind them because its not her who has to live with this. I still stand by saying I agree with your husband.

Soehls, you ask that if it isnt a big deal, then why give the disorder a name. It isnt a big deal. they gave the disorder a name, simply because the majority of people do not have seizures. It is outside the norm and people are always pushing others to be their version of normal. Yes, seizures are something annoying to live with, and yes there is the odd person who dies from it. But this is really no different than putting the label on a Mother. Being pregnant and going to be a mother is not a huge deal, but yes, women and babies have died from it. But just because you are now a mom, doesnt mean you have to make a huge deal about not finding a babysitter.

As far as I am concerned, a simple partial seizure is no more dangerous than a hang nail. A simple partial seizure is an annoyance, just like a hang nail. If its bad enough, it can put a damper on your daily task, just like a hang nail. But if left without proper treatment and it goes for too long, it can have dire consequences (medication daily for SP seizures, and antibiotics for a hang nail infection.)

 

[no.guru]

A simple partial seizure is an annoyance, just like a hang nail. If its bad enough, it can put a damper on your daily task, just like a hang nail. But if left without proper treatment and it goes for too long, it can have dire consequences (medication daily for SP seizures, and antibiotics for a hang nail infection.)

If your simple partials have been as mild as this then you're lucky, but there's not one simple partial and they're not all the same. Atrial fibrillation would indeed put a damper on your daily tasks.

That's only one of many possible consequences of a seizure, and it's not likely her son will have consequences as severe. Your comments about partial seizures in general are ignorantly dismissive.

 

[epileric]

Also remember that even if the seizures are small, the more frequent they are, the faster the brain gets used to misfiring at that same point and the chances of stronger misfiring & hence more intense seizures increases.

 

[ilovetorun]

It's possible to be overprotective or to overreact, of course, and you wouldn't want to treat your son differently unless you know there are specific situations he should avoid. I don't know you and I haven't seen your reactions, but based on what you've said here your son is lucky to have you.

I don't feel that I have over-reacted to his seizures. He is not on daily meds and won''t be unless he has a 3rd seizure. He is treated no differently now than he was before the seizures. The only restrictions he's been given is that he can't swim alone (he's only 9 so that isn't a possiblity anyway) and he's not allowed to operate motorized vehicles. Other than that, he's good to go. It frightens me that there are people out there who think that a simple partial is like a hangnail. That disturbs me a lot. And now that I think about it, maybe that's why my husband doesn't think it's a big deal. When people think "epilepsy" the think of grand mal seizures until they know someone who has a different type.

 

[ilovetorun]

Simple partial seizures are not that dangerous unless one lasts 10-15 minutes long. Even having multiples a day is not enough excuse to use diastat. I think that you would have a better chance just calling an ambulance for a longer simple partial. as most of the time, awareness is still retained, and you need to use some discretion when choosing to use it to avoid embarrasment and pain.

He will only be given diastat for a seizure lasting more than 5 minutes in duration. His school is 15-20 min from a hospital if he's taken by a staff member, further if we have to call the ambulance. It's only to be used in that scenario. Honestly, I doubt we'll ever have to use it, but better safe than sorry. And simple partial seizures can be dangerous from a neurological standpoint. Not sure where you'd get info otherwise.

 

[CathyAnn31]

I'm glad you trusted your instincts and got the medicine. It's better to be safe then sorry.

Hopefully he won't ever need it, but just in case...

 

[Fedup]

Ok lets recap, "Last night, I told him I was going to the pharmacy and see how much it was going to be" is there anywhere that you said you were going to BUY, do you not think he might feel left out so just stay away

" So we had a long discussion about the seizures." are you saying you talked about your son having eplipsey or were you talking about "seizures". No 2 epileptics are the same, no 2 people have the same reaction when they get a seizure and no 2 people have the same reaction to the same drugs, it might agree with one and disagree with the other.

I am sorry for being rude, but to be honest from everything you have writen, "its everything I have done" yes its good, its very good you have the medican and all the safty precaution are in place for your son, now how about the rest of the family.

Again I am sorry for being rude.

 

[CathyAnn31]

Fedup, I'm sure she didn't expect for her post to be so picked apart. She doesn't need to validate anything to any of us.

I can't believe some of the responses to this thread.

As a mom, I would have done the same, even if my husband and I didn't agree. Anything to keep me from worrying myself to death. My kids well-being comes 1st.

 

[ilovetorun]

Ok lets recap, "Last night, I told him I was going to the pharmacy and see how much it was going to be" is there anywhere that you said you were going to BUY, do you not think he might feel left out so just stay away

" So we had a long discussion about the seizures." are you saying you talked about your son having eplipsey or were you talking about "seizures". No 2 epileptics are the same, no 2 people have the same reaction when they get a seizure and no 2 people have the same reaction to the same drugs, it might agree with one and disagree with the other.

I am sorry for being rude, but to be honest from everything you have writen, "its everything I have done" yes its good, its very good you have the medican and all the safty precaution are in place for your son, now how about the rest of the family.

Again I am sorry for being rude.

The reason I went ahead and got it is because it's the height of stupidity to go to the pharmacy, get the price (which I was expecting to be more like 500 from what I'd heard), come home, tell him and have him say OK, then go back and get it. Had they said 500, we would have talked to the Dr about possible alterenatives, but doing nothing is/was not ever an option adn 100 isn't bad for diastat. He didn't understand why he would be prescribed any meds at all because he didn't realize that the seizures need to be managed because he wasn't "flopping on the floor".

As for discussing his seizures vs discussing him having epilepsy, well, I don't really know how to answer that . We talked about the nature of his seizures and the fact that two of them has given him the diagnosis of epilepsy. They go hand in hand so I don't know how we'd discuss one without the other. He is currently on no meds at all so it's not like we can discuss reactions as we would have no idea what that would be.

I'm not sure what you mean by "now how about the rest of the family." The seizures dont dominate our lives or even come up in discussion once a week. We just go about our business and if he has another one, we'll deal with it then. He is a normal, active 9 year old who doesn't live in a bubble by any stretch. It wouldn't have come up even now if we weren't doing some planning for back to school. Our youngest is 6 an is only marginally aware that his brother has even had a seizure. It, by no means, has a day to day impact on how we do things. However, at times like back to school or when he goes to a friend overnight, we have to discuss it to make sure he'd be OK if he had a seizure. It just shocked me that my husband didn't realize how serious a seizure could be. Maybe I shouldn't be shocked because apparently he's not alone, even among people who have seizures themselves.

 

[ilovetorun]

Everyone who suffers from SP pretty much starts in this stage, while regular medication is building itself up in their system. There really is no worry on safety etc. He should be treated like a normal child and it would probably make him feel less embarrased and reserved about his seizures if you didnt make a big deal out of them. Later on down the line, it could make him feel embarrassed or defective if he thinks that having seizures is something that is frowned upon, or makes him a permanent child.

I dont know how old he is, but you might want to have a chat with him and your husband and any siblings and immediate relatives. Make it known to them that him having seizures is NOT a big deal, and doesnt make him any less of a person and doesnt change what he can and cannot do (although some supervision may be required such as swimming etc, especially if he starts having tonic clonics.)

He is 9 and is really fine with having seizures. The first one was in a public place and a lot of his classmates saw it. He told a lot of his friends and isnt embarrassed about it all. I've asked him if he wants other kids to know or not and he said "I told everybody anyway so I dont care....it's just a seizure." He has a wonderful attitude towards it and was just relieved that he doesn't have a brain tumor like the child that he knows who does. He takes no meds so it can't be related to a med building up in his system. The danger is in the partial seizure generalizing, which is a possibility that needs to be planned for.

 

[julie wishes]

Simple partial seizures are not that dangerous .

Rae... where can I read more about this?

 

[julie wishes]

Also remember that even if the seizures are small, the more frequent they are, the faster the brain gets used to misfiring at that same point and the chances of stronger misfiring & hence more intense seizures increases.

Eric... where can I read more about this? Eric and Rea, these are strong statements that I actually really need the answers to. Is this something you've read or have heard about or experienced? I'd really like to read more on these topics

 

[epileric]

I think it was my neurologist who explained it to me a long time ago. I don't know where to read more about it but I do know that the misfiring of a neuron over a long term period will adversely effect the neuron increasing the probability of it misfiring again.

There is evidence that seizures cause brain injury, including neuronal death and physiological dysfunction.

http://www.ncbi.nlm.nih.gov/pubmed/14999166

Most seizures do not cause brain damage, but ongoing uncontrolled seizures may cause brain damage in young children.

http://www.ninds.nih.gov/disorders/epilepsy/epilepsy.htm

 

[julie wishes]

Thanks. My neurologist said one thing then said the opposite. She is so confusing. Still looking for a good MD to help me through this. Thanks agn.

 

[Fedup]

ilovetorun

I am sorry, misunderstanding between us, now I like your sons attitude, a little like mine at his age, he will get on ok, so sorry, from what my Mother told me, I seems that my father even though he knew what was happening was in denial and wanted to pretend it did not happen to one of his children, but it did and it was only when things got too much for my mother, that he had to confront the situation, so maybe something like that would work, your right leaving everything on your shoulders is not fair, there is one other thing though, which I did find strange at the time and its only now that I write this that I think of it, my mother came to me one day and told me I should talk to my father about what was happening and what I think of going to doc and seeing neuro, maybe this had an affect on him, we did spend a while talking. To be honest you have done a pretty good job as regards your son and this I commend you on, but yes your husband is another story. So again SORRY. There are ladys on here who might have a different idea