Not seizure free anymore

[Michigan]

4 year after her last seizure and 21 months after being taken off seizure meds my 15 year old had a grand mal seizure in a restaurant yesterday. We were just getting ready to go when she put her hand on her neck and said I think I'm going to throw up. I had alread paid so I grabbed the back of her wheelchair to get her out and it happened an 11 minute grand mal and yes during the seizure her oreo cookie pie came out all over her shoes the floor. We were the only ones in the restaurant when it happened so the wait staff was really helpful in calling 911 and keeping her sister calm.

Today her speech is still slured because she bit her tongue really hard and it's still swollen on one side.

She was suppose to be in a pool swimming at the time it happened and at the last minuted I changed the swim plans. I would hate to think if could have happened while she was under water.

 

[ducklite]

My SIL had been seizure free for ten years, and suddenly had one while driving and went head on into another car. Thank God no one was seriously injured, but that ended driving for her. They think it may have been brought on by stress.

I don't know what to say except I'm sorry and she'll be in my thoughts.

Anne

 

[Evil Queen]

My thoughts and prayers are with you. I have never had to deal with this, but deal with many other things.

But I am so sorry for you and your loved ones.

 

[Nik's Mom]

How terrifying for you! My prayers are with you! Thank God you changed those swimming plans!

 

[loving mom of two]

So sorry to hear about your daughters seizure. My 10 year old son was seizure free for 2 1/2 years until last October when he had his first grand mal seizure. Up to this point, he was only having absence or petit mal seizures. My son had just gotten out of the tub. Like you, I would have hated to think what could have happened. My prayers are with you and your family!

 

[RickinNYC]

I'm so sorry that this happened to her. My other half, Joe, is an epileptic and he was seizure free for almost 12 years when, WHAM!, he got hit with one a couple of months ago. He was so upset and depressed and I could do nothing but give him a hug. He was so happy not having to worry about grand mals and now this.

His mood has changed considerably and he's the easy going, happy guy he always is, but I know it's on the back of his mind.

 

[SueM in MN]

Sorry to hear your news, but glad it didn't turn out worse.
My DD has never been seizure free for more than a couple months at a time. I know how disappointing it is after a short time, but I can't really imagine how it is after as long as your DD had.

 

[3DisneyNUTS]

Michigan, I am so sorry about your DD. I hope they stop soon! How is she doing today?

RickinNYC that stinks I hope your BF can stop having them too.

Hopefully since the meds are constantly changing they will have on that will help both cases with minimal side effects. Siezures stink thats for sure

 

[Hollymom1229]

I'd been seizure free for 10 years and off my meds for 8 years, when I had a grand mal on March 15th. It's so frustrating when you are so sure that you are done with them, and then something like this happens. Michigan, I can relate to your daughter. Mine happened in the basement of our house, I was about to head up the stairs when it happened. I don't want to think what would have happened if it hit 30 seconds later.

 

[Densgirl]

I'm so sorry to read this. My DS has never achieved seizure control in 13 years of epilepsy. It is like the holy grail to us and I can't imagine how it feels when it ends. Like others have said, thank god you changed your swim plans.

 

[wide awake]

This has happened to my nephew twice in the last two years...seizure free for almost 10 years...then a seizure. Both times at the end of the school year so think stress played a part, and once he was sick so that didn't help. They've upped his meds but the whole thing has been very upsetting to all of us. We really thought he would never have another. So sorry this happened to your DD.

 

[Michigan]

Well we just finished doing the Michigan Wheelchair Games. It's the first time she has been back in the water since the seizure and she had no problem doing her events. As a matter of fact she got 9 first places and go the most valuable junior female athlete award.

 

[FutureAshleyDukes]

Bless her heart. My fiance has epilepsy, he's had a seizure at least once a month since he and I started dating, and that's been for 2 years now. I know it must affect your whole family. We're having to postpone our wedding due to a new procedure they're wanting to try with him, he's had epilepsy since age 9 and none of the medications will really stick it seems. Your daughter will definitely be in our prayers.

 

[Densgirl]

Well we just finished doing the Michigan Wheelchair Games. It's the first time she has been back in the water since the seizure and she had no problem doing her events. As a matter of fact she got 9 first places and go the most valuable junior female athlete award.

What great news. I came here to see if there had been an update and how great is this!?! Big congratulations to DD.

 

[babybelle]

Well done to your daughter Michigan.

Our DD (age 5) has rarely had a seizure-free day since her first episode age 3 months. To be seizure free is like the Holy Grail to us too densgirl. We are now fortunate (if that is the right word) enough to be on the waiting list for surgery (removing left temporal and disconnecting left parietal) and this should take place within the next 2 months.

DD has global development delay also and has only a handful of words although she understands quite well and is starting to use Makaton. IS there anywhere we can get Makaton signs for Disney character names, rhymes or songs.

Our thoughts are with everyone who has epilepsy.

 

[SueM in MN]

DD has global development delay also and has only a handful of words although she understands quite well and is starting to use Makaton. IS there anywhere we can get Makaton signs for Disney character names, rhymes or songs.

Our thoughts are with everyone who has epilepsy.

I had never heard of Makaton, so I did a google search and didn't come up with anything. If I understand correctly, Makaton includes a form of sign language and some picture symbols. The symbols look very similar to Dynasyms and Boardmaker symbols, which are the common picture symbols used in the US. I'm pretty sure there are no Disney Dynasyms, but there are some Boardmaker ones.
For signs, if there are not any Makaton ones, there probably are some American Sign Language ones that hopefully someone can post about.

In my searching, I did run across a website that had Assistive Technology links and links to some nice PECS (picture cards). I don't know if it woulod be helpful to you, but it looked like a pretty good site.
http://www.familiestogetherinc.org/assistivetechlinks.htm

 

[Talking Hands]

ASL signs for Disney characters,rides, stories and songs will not be found in any ASL dictionaries. I really wish they would publish one of just Disney stuff but there is so much more that are impostant that it is never been done. The only place to learn these signs is at the Disney parks when you see the interpreters using them. Maybe if some of us ask Disney they might be kind enough to do it. I know many deaf kids and austistic kids who would benefit by this.

 

[babybelle]

Thanks Sue, Makaton is based on BSL and uses some signs as well as pictures. It is really used as a help for the child who can't talk well to communciate back. For example, my daughters favourites are BSL sign for 'more', 'pig' and 'home'.

It would be good to get some signs for characters before we go because we could use pictures and signs to help her recognise them when she arrives.

I'll keep looking around but thanks loads for your help so far.

 

[SueM in MN]

Thanks Sue, Makaton is based on BSL and uses some signs as well as pictures. It is really used as a help for the child who can't talk well to communciate back. For example, my daughters favourites are BSL sign for 'more', 'pig' and 'home'.

It would be good to get some signs for characters before we go because we could use pictures and signs to help her recognise them when she arrives.

I'll keep looking around but thanks loads for your help so far.

'More' and 'pig' were some of my DD's favorite signs when she was little. She has cerebral palsy and can't talk, but she can sure communicate!

One of the things we did for DD when she was little was made some special Disney communication books. This sounds like a lot more than it was - we actually had some very small, inexpensive photo albums and made pages with some specific things she might see in the parks, like characters.

 

[babybelle]

I think I'll try the photo album thing (and add in some pictures of juice,water etc). Although she doesn't have many words she sure can get her point across! But any help to make her more communicative would be great!