Wednesday, July 17, 2013

Summer, 2012, when we started medication number two

Since the seizures kept coming, we were scared of the neighborhood pool.  It was just too crowded to see Elisabeth every second.  Especially while we were also watching a crawling baby.  We tried tag-teaming, but just decided it wasn't worth it.  So, we got a water slide for the back yard instead.

It's Houston, and summer is totally unbearable without water.  It's just so hot.  So, we'd attach the hose, turn on the blower, and get the kids sliding. Some neighbor kids were here, adding to the fun.  Running around in the heat, and sliding in the cold hose water.  Grown-ups were talking, and trying to pretend it wasn't 100 degrees in the shade.

Elisabeth ran by me, into the house.  Slipped on the tile.  Got up and kept running.  Hid under the dining room table.  Talked funny.  I called the neurologist.  We upped the Kepra.  She got a few weeks off.  Then, the seizures started again.

Every time Elisabeth was deep in thought, or swallowing, it looked like a seizure.

"Are you OK?"  "yes, mom, I'm OK"

"Are you OK?"  "YES!  Why do you keep asking me that, silly mommy???!!!"

After we upped the dosage three times, she had a weird one.  She was sitting on the counter.  And yes, we knew that was dumb, but just forgot.  She pitched forward.  I grabbed her.  Thank goodness I was there.  She was heavy to me, as light as she was, when she was a deadweight.  She stood up and seemed like she was finished, then started seizing again.  This time she hugged me, mid seizure.  And started talking,

"I'm OK, mom.  I'm OK."

But she wasn't OK.  She wasn't there.  She was just repeating what I asked her morning, noon, and night.  She wasn't OK.

The neurologist ordered another MRI.  My girl who hates pain, and cries for needles, went and got another IV, and lay still for over an hour, in a cave, while a machine made loud noises.  She never cried.  Or complained.

The neurologist, Dr. Abid, discussed the results at the next visit.  She thought it looked normal, but said they couldn't tell for sure..  "Normal is good.  That means she'll probably outgrow it."  

Hurray!!!  Nothing is wrong with her brain!!!!!

But the seizures kept coming.   Elisabeth was feeling sick again.  It seemed to me like she wasn't even on medication.

Dr. Abid  had someone else look at the MRI.  "It's not normal after all.  There's still a possible swelling on the left side.  We're going to start her on Trileptil as well.  That works better for this type of epilepsy."

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