Today we start weaning Lizzie’s phenobarbital.  She has been on this medication for epilepsy since she was about 3 months old.  She was on such high doses as a baby to keep her seizures under control, that we didn’t realize is was holding her back.

When she was a baby, Lizzie was content to lay in her crib, or sit in her bouncy chair, and didn’t really seem to interact much.  We thought that this was due to the damage to her brain caused by her hydrocephalus.  We thought that her not interacting, and being content all the time, was her baseline.  We did not realize that this medication, especially at the doses she was on, could be holding her back.

Lizzie was always most under control with her seizures when her blood levels of the phenobarbital were at the high end of the therapeutic range (the range at which the medication works for most patients).  Every time Lizzie had a seizure as a baby and toddler, they would raise her phenobarbital dose.

Our first neurologist never wanted to check Lizzie’s levels at all.  Every time she would gain weight and then spike a fever due to illness, she would have a 1/2 hour to 45 minute seizure.  It was horrible.  When I mentioned to our pediatrician that her levels were always low when these breakthroughs happened, she asked how often we had blood work done.  I told her I’d asked and been told it wasn’t necessary.  She gave us a referral for a second opinion.  Looking back now, I think our first neuro decided that Lizzie’s inactivity was her baseline, and why bother checking her levels.  Just what I’m thinking.  I can’t ask him, because in the time period when we were seeking a second opinion, he passed away.  I don’t know, maybe he didn’t put the effort in because his own health was poor.  Whatever the case, Lizzie was now under the care of our second opinion doctor.

During this time I found out that one of the side effects of this medication was developmental delays.  I looked at my daughter, who was still not really participating, couldn’t sit up at 2, and was content to be left alone, and I wondered about the medication.  I asked neuro #2 and he said that since her seizures were febrile (caused by fever) that phenobarbital was the best medication for her.  At least he kept her levels in check.

Then our insurance changed.  Along came doctor #3.  At our first meeting, I asked her about the phenobarbital, and she looked at Lizzie and said she could see why I wanted to try to find something else that would work for her.  She also stated that Lizzie’s seizures were not really febrile, but rather when her levels got low a sudden fever would trigger the seizure, so it was not the same thing.  We started her on a different medication and started to take away the phenobarbital.

Within a month Lizzie sat up for the first time.  She was almost 3.  We were at a friend’s house and had Lizzie on the floor and I looked over and she just sat up.  Like she’d always been doing it.  I nearly cried.  Something else that happened at this time was that Lizzie seemed to wake up.  She was so much more interactive.  It was wonderful.

Many times over the past few years we have tried to reduce the phenobarbital, but each time no matter how slowly we reduced her, she would have a seizure after a few milliliters reduction.  It has been a slow road to take this medication away, but every time we reduced it she would gain something.  Over the course of these reductions she: sat up, got on all fours, crawled, tall-kneeled, pulled to stand, and gained the words “Mamama” and “All done”.  Now she is cruising the side of her bed railing, reaching for toys, and being completely feisty.  It’s wonderful.  At almost 8 she is finally acting like a fully interactive toddler.

I am so excited to be starting to reduce her again.  She is now on two medications in addition to the phenobarbital.  She has been almost 7 months without a seizure (the 7 month anniversary will be on her birthday next week) and her levels of phenobarbital are the lowest they’ve ever been – barely a blip within the therapeutic range.  She’d always been seizure free on the phenobarbital at a level close to the top 38 or so out of 40, now she’s been seizure free at a level of only 16 with 15 being the bottom of the range.  I feel good about this.  Tonight at bed time will be our first reduction.  Our doctor wants us to go down by 1 milliliter for the next month, and then we are to see her.  I am so ready to be rid of this medication.  I guess for now we just be patient and wait and see.

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