LisaGuthrie

Hi everyone,

I don’t think that this board really has a “host”. At a development board I frequent every so often the host will ask for roll call and then a related question to the board.

There are so many good people here that I thought maybe it would be a good way for everyone to meet each other. Maybe an introduction (name), age, type of seizure and meds. You might want to include what you do for a living, if you are on the board for yourself or someone you care about.

I guess I’ll start and if it works - wonderful - we’ll do it again in a couple of weeks with a different question.

Question: What is the funniest thing that has happened to you because of E. If you find that nothing about it is funny and you can't relate, let us know why.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~
My name is Lisa; I’m 39, I live in Tampa FL with my husband and 3 kids, and work in Internal Audit. I’m here for my son Jake (17 months). Jake has complex partials, tonic/clonic and absent seizures we’ve been at this for the past 7 months. Currently he’s on Dilantin, Tegratol and Trileptol and he’s behind developmentally because of seizures, meds and low muscle tone (Hypotonia).

The funniest thing to happen to us because of E: In the grocery a few months ago, I am waiting in line at the Deli. A little boy named Bradley, age 4 was tired of waiting with is Dad (Dad clearly had his hands full, 3 kids in tow from maybe 7 to 1 yr). So I didn’t mind talking to Brad and Jake was loving the attention, the boys are playing peek-a-boo and patty cake.

During our conversation Jake shows his aura and I knew that we were going to have one within the next 60 seconds or so. The line was long so what do you do?? I take Jake out of the seat and lay him down all the while lil Bradley was taking in the whole thing (I kind of forgot I was speaking to him).

As I’m sitting in the corner with Jake; waiting for it to start, Bradley asks what I’m doing. I tell him that Jake is going to have a seizure and I asked him if he could count with me. Jake’s head turns to the right, then his eyes and he starts to change color (turning blue) as his body stiffens out. Poor Bradley’s eyes were huge, but he was counting with me, very quiet and never taking his looking away from Jake. Luckily this one wasn’t too bad, 40 seconds and no convulsions – just lots of twitching, and he comes out really quick –all smiles and patty cake!

About that time Bradley’s Dad notices and comes speeding our way yelling, “Brad, get away from there – you might catch something”!! But, Brad doesn’t notice he's being spoken to – he’s just watched something that he’s never seen before and doesn’t understand... He’s sitting on the floor with us and looks up and says “Wow, Daddy, you shoulda saw it. Why can’t our baby do something fun, why doesn’t Ashley change color?” At this point Dad realizes what’s going on (Jake’s still a little glassy eyed and a bit twitchy) and starts apologizing, pulling Brad by the arm away from us.

I get up, sit Jake back in the cart and pick up this other little boy, look him square in the face and tell him what a big help he had been, that I didn’t think I could have handled it on my own. I also tell him that Jake’s got extra energy or sparks going in his brain and Dr.s call it epilepsy. I asked him to remember Jake, that someday they may ride the school bus together and if Jake had a seizure he could need somebody that’s not afraid of epilepsy to help him, cause even though his eyes are open he is kind of asleep and doesn’t know what’s going on around him.

I sit Mr. Bradley on his feet while his dad is throwing me daggers and yelling at this little boy to mind his own business. As they walk off I can still hear this little guy telling his Dad that Ashley needs to learn to turn blue, why doesn’t she spark? The last thing I hear was Dad telling Brad he doesn’t know why Ashley doesn’t spark or turn blue, ask your Mother..."

I laughed all the way home, our first public episode wasn’t that bad! And a wonderful little boy learned that just because someone is different doesn’t mean they’re not fun.

Hugs all round!

Lisa and Jake