Seizure Disorder and Child Mind

[Selfish]

Hello.

This is a General-type question to a General-type audience.

Someone close to me has been having seizures. The kind that make the whole body start swimming on dry land, and moving large pieces of furniture around. Started in February, and well, we were told to "expect more".

Now, I once had a boyfriend with these types of seizures, so I know the basic "rules".
Nothing in the mouth. Protect the head from flying about and crashing into things. Move stuff out of the way, and try to keep in recovery position, and let the person twitch no longer than five minutes straight before calling an ambulance. Time the seizure, and note if there is one side moving more often than the other. If the person kinda stops, then starts again then you time that one too. They`re not allowed more than three times like that before you call the ambulance again.

We got them a medical alert bracelet, which actually stays on during these times when the brain has its electrical storm. That`s pretty amazing considering how tiny this person`s wrist is and how long the medialert bracelet was before ammending it.

Now the questions: The hospital (children`s neurology in particular) have run an EEG, and will be having a MRI soon. The appointment to visit the specialist is not until May 28th ish (better check that now, actually. lol). I know what to do until then to care for the person; but now I am looking for other people`s experiences with this alternative order of the brain function.

The person doesn`t want to have to be "babysat" this summer; they don`t like swimming in general, and have promised not to skydive. lol
I *do* want to know how some people have coped with the realization that there is another variable in their lives, and the practical changes they have made to accomodate a new(ly found) situation like this.
Last summer we were very fortunate; the school had a playground type program that lasted from 9 - 12 and then from 1 - 3 that the person could hang out with their friends etc., and a neighbour kept a close eye on them to ensure that there was no shennanigans while I was away at work.

The person is of "legal age" to be on thier own, in fact old enough to make money on their own, and was THRILLED that I allowed (and paid for) them to take a babysitting course, etc., and is actually saving their own money towards some sort of platform gaming station.

They are DESPERATE to keep their relative autonomy, but maternal instinct and common sense indicate that changes and accomodations need to be met.

Inviting people to share with me about their methods of coping, dealing, and assisting this situation.
Have checked quite a few places in and around the area for some sort of support group or even FAQ for this same information, tips, tricks and ideas, but there is a dearth of information. I certainly don`t want to over-react or smother, yet I do believe that this person should be cared for in a sane fashion.

Halp? Halp? I needs an adult! lol

With much thanksgiving,
Selfish

[Lady Cygnet]

The level of care an autonomy that a person with a seizure disorder can have depends on the seizure disorder itself and its level of severity. It sounds as though your friend has developed epilepsy. If so, she should eventually be able to return to an autonomous lifestyle once her healthcare team is able to come up with an effective regimen of medication and therapy.

In my own life, my paternal grandmother and my ex-husband both had epilepsy. My grandmother's was lifelong; however, my ex's developed after he was hit head-on while riding a bicycle.

I'm not entirely sure what she took before dilantin became available in the 50s, but she took dilantin for the rest of her life, and it worked pretty well for her. She didn't drive, had no real interest in driving, and she spent most of her time in Bible study, helping out at the church, sewing, and taking care of children and grandchildren. She kept herself busy, and although she did complain about other health issues, she didn't complain about her epilepsy or let it keep her from doing what she felt needed to be done.

My ex, on the other hand, wouldn't take responsibility for himself or his healthcare on any level. He repeatedly refused or forgot to take his medicine (also dilantin), and he ended up spending the night in the hospital after he had a seizure and wrecked his car when coming home from work. I'm very surprised that he didn't lose his license then...but he did lose it later, after he had another seizure and totaled his car.

Anyway, if it does turn out that your friend has epilepsy, she should be able to lead a fully functional, fulfilling life, as long as she is willing to be responsible, take her meds, listen to her healthcare team, and avoid allowing her condition to unreasonably limit her dreams and ambitions.

(Note: I default to singular pronouns that are gender-specific, as there is no gender-neutral singular pronoun that sounds respectful enough when addressing the problems of a fellow human being.)

[russianreversal]

My dad has epilepsy, and there is a good chance I might have it too. Like Lady C says, responsibility is the most important part of dealing with epilepsy. As long as the person takes their meds and doesn't take obvious risks (as you said, skydiving) they should be ok. My dad began taking dilantin at around 20 and seeing a neurologist once a year or so, and aside from that he's been able to do anything he could usually do. He's legal to drive, and now only has to have neurologist visits about once every five years or so.

Treated properly, there is no reason they should be unable to do anything they would normally do.

As to the immediate problem, if you could find a sport or something club related thing they're into, you could probably sleep (or work or whatever) easier. And no strobe light tag. I learned that one the hard way.

Interestingly enough, there was an exhibit at a science museum that I worked at that had a spinning spiral... thing that one would stare at for a good 3 minutes or so to get the scientific effect. I was on doctors orders not to look at that thing.

[Selfish]

I thank you both.

The school has called me twice now, both times to take my son away.

The hospital said that he is okay after the brainstorm, however the school is less than sympathetic towards him after he has one. I find this especially ironic since they were the ones that were fighting me to put my son INTO school so many years before. (We homeschooled K, grade one and grade two.) He needs a twenty minute to half hour (at most) to just lay on the nurse`s cot, have a quick nap (just as predicted by the hospital again) and then he`s ready to go back to the classroom. During this time he really does not even to be supervised. The seizure just takes a lot out of him.
He wants to stay in school, not do boring homework at home with Mom hovering over him wondering what to do with another unpaid day. Someone has to pay for eventual meds, I expect, as Dylantin does not get plucked from cherry or maple trees.

I do not like the "zomg he`s a monster" feeling I get when they demand that I pick him up from school. Had conveyed to them already that the hospital said he may just need a nap, then he`s good to go (and frankly does not WANT to spend a day at home, no friends there.) The last time I picked him up it was "Why did you take so long to get rid of him for us!" It had been about half an hour from the time they called me at work to when I got there.

Two minutes later we were home: he had already had a twenty minute crash on the cot, and we played canasta and RaiRo for the rest of the afternoon. Then we made dinner, and he had an earlier night to bed.

It will be more of a relief when he is seen by the neurologist, because then we may have more to go on than just "Wow. May be epilepsy, may be a tumour, may be a migraine, may be an allergic reaction".

You both again have been very reassuring and helpful; wish to know how other people live with seizure disorder; either themselves, or someone they love. PM me even if needed, rather than post, depending on how you feel about sharing.

Oh, and Lady Cygnet? I appreciate your gender specific. I always use gender non specific for the same thing. ^^

~selfish