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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Does anyone carry anti-seizure meds?

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Does anyone carry anti-seizure meds? (Read 4537 times)

twinsmom

Experienced Poster

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16 year old twins with
MM

Posts: 128
hollis, USA, NH, New_Hampshire
Gender: female

Does anyone carry anti-seizure meds?
Aug 15^th, 2007 at 11:42am

Hello MM Family! Smiley

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) Wink

, 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! Kiss

Kristen

"Come to the edge." "We can't. We're afraid." "Come to the edge." "We can't. We will fall!" "Come to the edge." And they came. And he pushed them. And they flew. by Guillaume Apollinaire

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moyamoi

Ex Member

Re: Does anyone carry anti-seizure meds?
Reply #1 - Aug 16^th, 2007 at 5:55am

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

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twinsmom Experienced Poster Offline 16 year old twins with MM Posts: 128 hollis, USA, NH, New_Hampshire Gender:	Re: Does anyone carry anti-seizure meds? Reply #2 - Aug 16^th, 2007 at 11:12am 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
Back to top	"Come to the edge." "We can't. We're afraid." "Come to the edge." "We can't. We will fall!" "Come to the edge." And they came. And he pushed them. And they flew. by Guillaume Apollinaire IP Logged

LA Senior Poster Offline Moyamoya survivor since 1999! Posts: 334 Kneeland, USA, 15, 113, C Gender:	Re: Does anyone carry anti-seizure meds? Reply #3 - Aug 16^th, 2007 at 3:20pm 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)
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Rena

Senior Poster

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Hi, My son Tyler was diagnosed
with MM in 2003

Posts: 467
, Colorado, USA
Gender: female

Re: Does anyone carry anti-seizure meds?
Reply #4 - Aug 16^th, 2007 at 8:52pm

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've learned to never underestimate the impossible. -Blake Sheldon-&&There are no failures, just options tried. -Thomas Edison-&&

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kotipup

Experienced Poster

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My daughter, Daphne, has
Moyamoya

Posts: 247
Landenberg, USA, PA, Pennsylvania
Gender: female

Re: Does anyone carry anti-seizure meds?
Reply #5 - Aug 17^th, 2007 at 1:38pm

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.

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SweetEmily

Ex Member

Re: Does anyone carry anti-seizure meds?
Reply #6 - Aug 17^th, 2007 at 2:19pm

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

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LA Senior Poster Offline Moyamoya survivor since 1999! Posts: 334 Kneeland, USA, 15, 113, C Gender:	Re: Does anyone carry anti-seizure meds? Reply #7 - Aug 22^nd, 2007 at 1:57pm Hi Everyone~ Thanks for enlightenment on this topic. Glad know. Linda
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hell_bytch_1 New Poster Offline Posts: 41 Waterville, USA, usa, 527, 47, ME, Maine Gender:	Re: Does anyone carry anti-seizure meds? Reply #8 - Oct 11^th, 2007 at 11:25am 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
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