Hello MM Family! [smiley=wave.gif]

Just wanted to check with people who can relate:  Are any of you carrying anti-seizure meds with you every where you go?

Our neurologist wants us to have Diastat with us at all times (it's a gel form of valium - given rectally in cases of seizures lasting more than five minutes).

We've never had to use it (I'm knocking on wood as I type) ;), and I'm wondering how long I should keep carrying it around.  He's very conservative, so I'm sure he would say forever!  

But the thing is, it kind of puts a damper on play dates.  "Hi, I'm Kristen, these are my girls.  I know we've never met, but if my girls should start having a seizure, please pull down their pants and administer this medication" - Can you imagine?  So, it's getting a little obvious that the play dates are always at my house, and I don't let them go to other houses unless I'm VERY comfortable with the mom.

You see, it's been almost 4 years since Cassie's  surgeries  & stroke,  and 3 1/2 years since Kate's surgery.  Is anyone else carrying these meds around?  I need your opinions, advice, your gut reactions.  Should I keep carrying it, and just be thankful that the play date issue is my biggest problem right now, or should I stop carrying it, take a chance, and hope that 4 years has been long enough?

What do you think?

Thanks for your help!  I don't know what I'd do without you guys!

Lots of love! :-* [smiley=hug.gif]
Kristen

Hi Kristen,
I would like to hazard a guess to say that if the twins haven't experienced any problems since their surgeries, it would probably be ok not to panic as much in regards to these meds. I would also imagine that the play dates would be with kids living in the same neighbourhood and going to the same school, so they would only ever be a few minutes away from you. I would inform parents to look for certain signs so that it would not put the twins in danger, but be close enough to tackle a problem if it should arise. Four years is a good time to try to relax and let go a bit. They are kids and have been through so much already in their lives, but they do deserve to try to live life as normally as is possible under the circumstances.
Hope this helps
Moira

It does help.  Thanks so much Moira, it's good to have another mom's opinion, especially one that knows what I'm talking about!  Thanks, again!!  Kristen

Hi Kristen~

Would an oral anti-seizure medicne work?

I've never had a seizure, but am on Diltiazem/Cardazam since my strokes and by-pass surgery. There are a number of oral anti-seizure medicines available.
Check with your doctor.
Hope you can find a better way.

Linda (La)

I would agree with Linda. Have a talk with the doctor and see if there is any other medication that would help.

Sorry I don't know if you have posted this with-in the year I was away from the boards, but do the girls have seizures still? To me it sounds like this medication is for people still actively having seizures.

I have to disagree with Linda... unless your girls have had a seizure recently, I would absolutely NOT go with an oral anti-seizure medicine.  They can have pretty significant side affects, and can affect a child's learning.  They definitely have their place (my daughter is taking one for seizures that she experiences daily), but I personally feel strongly against anyone being prescribed them just because they might - one day - have a seizure.

Also, if since the surgery the girls have not experienced seizures, I don't think you'd need to carry the diastat with you all the time.   If you have some in the house, and you and other parents are familiar with the signs of seizures, I think that would be enough.

My daughter had one minor seizure a few months after her surgery but her neurologist was completely against anti seizure medication. He said the side affects will out weigh the benefits of the meds unless she started to have seizures on a regular basis he said no to medication. My Mother had Epilepsy when she was alive and the side affects were really bad from the meds she was on.
Lori

Hi Everyone~

Thanks for  enlightenment on this topic.

Glad know.

Linda

Hi its Laura and i take seizure med i am opn 400mgs of tegratol a day.  even though i haven't had any siezures since i started the tegratol the dr's don't dare have me stop it either...I HATE PILLS!!!  LOL I take 200mgs in the am and 200mgs at night