Epilepsy is also known as a seizure disorder.  It is defined by the Epilepsy Foundation website as “a medical condition that produces seizures affecting a variety of mental and physical functions. . .  When a person has had two or more unprovoked seizures, they are considered to have epilepsy.”  Epilepsy can be caused by many things, but one common cause is brain damage or injury.  This is Lizzie’s case.

Lizzie had her first seizure in the hospital after her second shunt surgery.  I wasn’t there to witness it, and they described it as “seizure activity.”  I didn’t know at the time if that was the same as having an actual seizure.  It is.  They sent her home on phenobarbital, and she stayed on it.

Lizzie had her next seizure at home 6 months later.  I was home alone with her, and just seconds before she was in her high chair finishing her breakfast and I was doing dishes.  She was okay one minute and the next she was twitching.  I’m ashamed to say I froze.  I didn’t know what was happening, and I believe I was in denial.  My husband got home a couple of minutes later, and I called him into the bedroom where I had laid Lizzie in the crib.  He told me she was having a seizure (he’d grown up with a friend who had epilepsy), and to call the doctor.  The doctor told me to hold Lizzie’s leg firmly, and if she was twitching in spite of this to call 9-1-1.  That seizure lasted over 1/2 hour.  I later learned this condition is called status epilepticus.  Status epilepticus is when a seizure or grouping of seizures lasts longer that 1/2 hour from beginning to end.

Lizzie had status seizures every six months for the first two years.  Our first neurologist did not want to test her medication levels.  I asked him to, and he said it was unnecessary.  How it was unnecessary when she was having major seizures every six months (May and November – coinciding with weight gain, and triggered by fevers from viruses), I didn’t understand.  Then I mentioned this fact to our pediatrician, she gave us a referral for a second opinion.  We were seeing the 2nd opinion doctor, when I found out that the doctor we had been seeing had passed away, and we ended up with the second opinion doctor as our main doctor.

Then our insurance changed.  And we had to go back to our original facility.  We got a new neurologist, who we still see today.  We love her.  Before we started seeing her, I saw a reference online to phenobarbital being tied to lack of progression in gross motor and speech development.  I looked at my daughter, who wasn’t talking, wasn’t sitting up, and wasn’t doing much of anything physical.  I asked the doctor about it.  Could we take her off the phenobarbital.  She said she understood why I would want to try, and so we started weaning her gradually.  Lizzie seems to “like” the phenobarb though, and every time we would go more than a couple of 1/2 mls lower, she would have what I called her mini-seizures which are like warning shots for Lizzie’s epilepsy.  Her lips go blue and she makes a clucking sound in the back of her throat.  These last less than a minute, and always require us to re-up the medication.

We started her on Trileptal and started taking away the phenobarbital.  Soon after Lizzie just sat up, like she’d been waiting to do it.  She also became more alert.  It was like someone flipped a switch and turned her on.  With each lowering of the phenobarbital, she progressed more.  She said, “Mama,” and “All Done”.  She crawled.  And now she pulls up to stand.  I know some of this has to do with her therapy, but major breakthroughs still seem to coincide with tapering of the medicine.

As far as seizures, we were having one a year until this year, and then she had four in three months.  They have not been as severe though ranging from 10-13 minutes.  We added another medication, Keppra, and are talking about taking the other two away eventually.  It may take years to get her off of them, but I am looking forward to trying, as I am hoping new abilities will surface again.

Since the Keppra has been added to her regimen, she hasn’t had anymore seizures.  I am hoping this is the answer for her, but only time will tell.