Her first neurologist visit

Elisabeth was having seizures more often.  Right after she had them, she would get sick.  Not just a little sick, but retching, crying, tummy bug sick.  She started being scared to eat.  She didn't know when she would feel bad, so she didn't want to eat at all.

Now, Elisabeth has her Daddy's long, thin genes.  So, she didn't have much padding to begin with.  But, whatever she had, she lost.  She got THIN!  Scary thin.

She looked fragile.  Her skin was translucent, her eyes had dark circles, and her bones were sticking out.  Think of pictures you've seen of refugees.  Or cancer victims.  She just looked very, very sick.

I was so glad we had set up an appointment with a pediatric neurologist so early in the process.  This neurologist was the only one at TX children's who could see her before summer. Now, we made the application in October.  That's how many children need to see these specialists.  We were grateful that anyone could see her by January, and jumped at the chance.

This specialist's office was in Sugarland.  If you see a map of Houston, it's about as far from our house as humanly possible.  It was an hour and 15 minutes away.  I gave us an hour and a half because I'm directionally challenged and tend to drive around in circles, looking for a new place.

Dr. Abid listened to our story, got a case history, and checked neurological signs.  Thankfully, Elisabeth could walk on her heels, hold her hands palms up, close eyes and touch her nose.

The Dr. then showed me the MRI pictures on her computer screen.

"See this area of her brain is darker than the other side.  This means she has a swelling in her brain.  It could be due to the seizure activity, or it could be something else.  We just can't tell yet."

A PROBLEM IN HER BRAIN????   Please no.

 Out loud I just said "Ok"

"We'll start her on Kepra.  It has very few side affects, and doesn't interfere with other meds.  We'll do a very low dose.  If it works, we can wean her in two years.  I know medication is no one's first choice, but seizures are dangerous, so there is no choice.  We have to medicate them."

I knew there was no choice.  My baby was blanking out and physically wasting away in front of my eyes.  I was so, very glad there was a magic pill to make her seizures stop.  And that it was fairly safe to take.

"Yes, Dr., of course."

"If the Kepra doesn't work, you can call me at this number.  We can adjust the dosage by phone, since it's such a long way to drive.  I'll see you again in three months."

We started the Kepra that night.  It was a miracle.  I got my little girl back.   No more sickness.  No more seizures.  How wonderful that something so easy as 4 mg of Kepra day and night can stop electrical problems in someone's brain!!

 And it did solve her problems for about 12 weeks.   Until it didn't.