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Dmom3005 09-05-2008 09:22 PM

Please read and respond
 
Hi everyone.

Some of you know that my 17 year old has epilepsy. And that his seizures
are uncontrolled. I'm not sure if you realize that this means. He has them
in stores, on the street, at school and sometimes looks very much normal
but just doesn't have a clue what he has done.

But I have to make sure he is safe and also allow him to be a teen and young adult. Technically I've waited a little to long to give him some of the freedoms others get. But I did the best to find substitutes. Know that he is
asking for the freedom to go on his own, and things. Its time.

1. We live a block from the grocery. 2 Blocks and a busy road from the
Library. Both these are safe, except for the very busy highway.

2. Down the street is the convenience store, and I've been very careful
about this. Because he doesn't seem to have a clue at times he is even
on that road. Or how he got there.

3. Luckily many of the people in this town, know about his seizures. And would help. THe kids his age were taught to help.

4. I chose to buy a cell phone, and its got special numbers to call. And its in his hands so that if a emergency he can call. Not sure yet how that would work if he had a seizure and couldn't call.

5. The really neat thing is he is entering the jobs program at school. And they are going to try and use his cell phone as his emergency contact.
And he will interview at the local veternary clinic.


So what else can I do to allow freedom, but not slack on safety.

Donna

Abbie 09-05-2008 11:31 PM

Wow Donna...

Sounds like you've got all your ducks in a row...

I take it your son doesn't drive due to the epilepsy??? If he doesn't please make sure that he has a photo identification on him.

The only other thing I would add if you haven't already is a medic alert bracelet or necklace.

I know... teens don't want others to know all about their business... so maybe a necklace that he can tuck under his shirt. You can always have engraved on it---see note in wallet. The note could have epilepsy, medicines and contact information or other instructions on it.

That way if something were to happen all first responders, emt's, paramedics, firefighters, and police officers are trained to look for a medic alert tag.

:hug:
Abbie

bizi 09-05-2008 11:34 PM

i think you are doing a great job donna!
bizi

DiMarie 09-06-2008 12:00 AM

Donna
Many new cell phones have the ICE emergency contact on there. Mine has three to choose from if the ice contact is hit.

I think prepare yourself too....I had my daughter, even though nearly 30 made poor judgements as "she was an adult" and I got calls to pick her up from all over. Thank goodness at that time she had given up driving.

Unfortunatly I think we loosen the apron strings, but can not take them off. Repetative routes, repetative chores, repetative contact that everything is fine even.

At the vet assist. They could explain his duty, show the duty, and assist with it and then try on his own. The same way we all learned how to drive a car, roller skate, or cook.

You can try him sorting clothes and how to measure detergent, how long to dry. I have everyting on basic settings so everyone can use the machines.
With a reward system to reinforcing how well he is doing.

My 25 is having the seizures. he had a security job and they found him on the ground thinking he fell asleep....on the ground? He was alone for hours and that is not a good job. So we are trying to find a trigger for the seizures and also retrain to an inside job, or where people will be around.

It seems to have something to do with the vegal nerve, or heart racing from a mitral vaulve problem of some kind. It has been since he was 12....
Vegal stim brought on full seizures, even stopped breathing once.

Right now he is doing nothing. Gets even attitude about asking for chores to be done timely. He went through a lot of depression over the last three years and especially with the loss of my daughter last year. Since then he has not gone back to work.
Oh enough about me, but I can understand when they leave and giving them space, but the worry and fret....
Hugs to you, you are an intuative good mom
dianne

mymorgy 09-06-2008 12:30 AM

I also think you are doing a great job. How often does he have his attacks?
If it were my child, I would be very over protective and try to see that he got to where he had to go safety and return from the place safely. When did they start? Have they changed at all? I am hoping that maybe he will eventually have some warning.
Bobby

Mari 09-06-2008 03:54 PM

Dear Donna,
You and your son sound like you are making good steps.
The cell phone will give him some independence while giving you peace of mind.
The school programs and the possible work at the veternary clinic will be good for him.

You are a good mother.

Mari


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