Not sure what to do

[jmartinez1895]

I hope that some of you may have some advice or maybe have already been thorough this with a loved one. My son is 9 now and has many different types of seizures. Today he started asking me if i had a video of him having one. I told him that I do not and he ask that I film him the next time because he wants to see what it looks like. I can understand him being curious and it is his body after all, but to be honest, no matter how many times I watch him have one it tears me up and I just don;t think I can bring myself to film him. I am usually timing them and pulling out O2 and what not. I have found a few videos online, but again I do not find them very pleasant to watch. Do you think I should show him a video of someone else having one and see if that will scratch his itch or should I just not allow it. I would hate to frighten him, but all day he has been asking and once he gets something in his head it is hard to talk him out of it.
Id this a normal thing for people with seizures to want to see. I can see how it may anser some questions for them but again this is just so new to me and I do not want to do anything that could harm him emotionally.

 

[SueM in MN]

One story for you -
In my first job as a Registered Nurse, I worked in a facility where a lot of our residents had seizures, so someone having one while I was working was at least a weekly occurrance. One of our good friends asked a lot of questions about what happened during a seizure and what a seizure looked like.
After a lot of answers, he confided to me that he had epilepsy and was very curious what happened to him during a seizure.

I think it is natural to be curious. At 9, your son is old enough to have a lot of questions.
He is also old enough to search on the Internet himself and find one to watch by himself if he is curious enough you don't help him. That could be devastating to him without having you to discuss and share it with him.

As difficult as it is for you to think of filming a seizure, you have to be careful that he doesn't get the idea that the seizures are so horrible and scary that you don't want to film them. Chances are his idea of what happens during a seizure is even more scary than the reality.
IMHO, it is fair to tell him that you would have a hard time filming one. You don't want to scare him, but go more from the standpoint of how difficult it is to be a parent and see something happen to your child's body that you would like to stop, but can't.
Even if you can't answer his questions right now, you want to acknowledge and accept the question so he feels safe and continues to ask
I am sure you will find a way to handle this that works for your family.

 

[LockShockBarrel]

I agree with Sue here. Maybe just something as simple as telling him "When you have a seizure, Mommy has to be making sure you're safe. I do a, b, and c when it happens and I have to do those rather than recording it." At his age, you could also try working up to showing him a video. You could describe it in as much (appropriate) detail, or maybe slowly act it out or use a stuffed animal as a visual aid. Sue is very right though, that if he wants to find out bad enough, he will. I think it's better for it to come from you so he understands it in an appropriate way.

 

[rewardsinlife]

Well I would say maybe put yourself in his shoes. Say the dr. Diagnoses you with something you have never heard of...and says you have symptoms of it every time you come in for an appt. wouldn't you ask...well what do I do? What do you see? Cani fix it? Like the PPs said before me...it is natural for a human to be curious about life...especially their own and what might be affecting it. I know if the dr. Diagnosed me with something...I would run right home to check on every reliable resource I could to figure out exactly what it was..and how I can describe it to people who may be curious themselves.

Maybe he is being questioned by friends at school to what it looks like?Anyway..this is the age of technology and he will figure it out sooner or later ...whether we like to think it or not!

Can you have a recorder out if he has 'predictable seizure times' ..like he always gets one after lunch and set it on a table to record in the area where he is staying? If you catch it great...if not...well, say maybe next time you will get it. Oh and actually...recording the seizure can actually be beneficial for your dr. To see. ESP. If he is getting them so much and meds aren't working. A tape can show the dr. What type of seizure is present..the symptoms...etc. for further treatment. Good luck!

 

[jmartinez1895]

Thanks guys, I really needed some of the advice. I found a link on epilepsy.com that had some good info for kids and it was written in a manner that children can understand. I think that helped him understand the mechanics of what is going on. I also found a video on youtube of a man who was having a mild seizure ( more of drop type with mild twitching in the limbs) and his service dog was helping. My son has a service dog as well so while the seizures he has are different, he seemed very pleased and loved to see how the dog worked. We have a 72 hour video EEG planned for next month so maybe we will capture something that we can watch on it. In the past they have offered to let us see the images, but I always passed because I was in the room when it happened and personally did not want to see it again.
Thanks again so much for the help

 

[SueM in MN]

Thanks guys, I really needed some of the advice. I found a link on epilepsy.com that had some good info for kids and it was written in a manner that children can understand. I think that helped him understand the mechanics of what is going on. I also found a video on youtube of a man who was having a mild seizure ( more of drop type with mild twitching in the limbs) and his service dog was helping. My son has a service dog as well so while the seizures he has are different, he seemed very pleased and loved to see how the dog worked. We have a 72 hour video EEG planned for next month so maybe we will capture something that we can watch on it. In the past they have offered to let us see the images, but I always passed because I was in the room when it happened and personally did not want to see it again.
Thanks again so much for the help