Last Friday, we saw Lizzie’s neurologist.  Lizzie hadn’t had a seizure in over four months, and we were discussing how well she was doing, and how we would maintain what she was doing, and not change anything.

I was feeling pretty good about where she was with seizures, and the doctor and I had even thought we had discovered a connection between her recent breakthrough seizures, because a few months ago there was a shortage with Lizzie’s one medication, and for several months we were bouncing back and forth between the brand name seizure med and its generic counterpart.  I asked the doctor if this could cause seizures.  She seemed to agree that must have been the cause, because there was nothing else we could attribute it to, and because once we maintained the name brand the breakthroughs had stopped.  She even gave us a new prescription with the “Do Not Substitute” box checked.  Problem solved, right?

That night, one of our friends came by with Christmas presents for the kids.  We opened the gifts, and visited.  Lizzie was not as into her unwrapping as she had been at Christmas a week earlier, but she was still managing.  She was biting everything she could, which was odd, but not unheard of.  Our friend left, and my son and I were sitting on the couch watching TV.  Lizzie fell asleep in her chair during her feeding.  It was not the first time, and I figured that I would just wait until her feeding finished, and then move her to bed.  Then her eyes opened.  Her tongue was sticking out, and her lips were bluish.  I went up to her and touched foreheads with her.  This is how I draw her attention when she’s not focused or preoccupied with something.  She seemed to look at me.  She was making a clucking in her throat, but then she threw up.  Now I wondered, was this a seizure?  Is she sick?  She threw up a lot.  I cleaned her up, and left her sitting, because I wanted to be sure she was done, before I laid her down.  The last thing I wanted was for her to throw up laying down and aspirate.

After a few minutes, when I was sure she was done, I started moving her to her bed.  I got through our kitchen, to the hallway, and saw her foot bouncing.  I spun her around, and back to the front room, because her emergency meds are in her diaper bag there.  I grabbed her meds, and threw a blanket on the couch, while watching her and watching the clock.  My son informed me she was having a seizure.  I told him I knew, and sent him to get a blanket from her room.

I moved her to her couch, now at almost three minutes.  I gave her the meds while calling 911.  Threw the blanket over her, and told my son to wait by the door, and let the paramedics in.  This is usually Daddy’s job, but he was at work.  They took her to the hospital, and my son and I followed in the van with the wheelchair.

My son, only ten, was very helpful and attentive.  Once Lizzie was in the ambulance, and I was gathering what I needed for the hospital.  He went outside, and got the lift down for her chair.  He had his shoes and coat on when I asked (normally an agonizing feat).  But my proudest moment was when we were in the ER.  Lizzie was having her third seizure (or fourth if that vomiting episode was a seizure), and the nurse was waiting to give the meds.  Seizure meds are strong stuff, and they don’t want to over medicate anyone, especially a child.  When Lizzie had gone two minutes and they had flushed her line, the nurse informed us that she would wait another 30 seconds, and then give the meds.  Then she got a phone call, (being the charge nurse, she had it with her), and all of a sudden I heard a voice behind me say, “It’s been 30 seconds, give her the medicine.”  I had been so busy watching Lizzie, I hadn’t been watching the clock, but Michael was.  He made sure his sister got that medicine.  I was so proud of him for watching out for her.

Thankfully, that was the last time she had a seizure.  The only thing that showed up on her labs (AGAIN – sigh) was her low sodium level.  My husband finally arrived, having left work, and Michael went home with a sack of sliders and a chocolate milkshake.  Lizzie and I stayed the night, and finally got to go home the next afternoon.

Unfortunately, no one is in the office to make our follow-up appointments today, due to the holiday.  What I am going to ask is if there is anything we can give her, like a supplement, to bring that sodium level back up.  I know they are not going to want to take away the med that’s lowering her sodium while she’s having breakthrough seizures.  So, where does that leave us?  So much for doing well, and staying where we are.  Comfort and epilepsy do not go hand in hand.  Shame on us for letting our guard down.

It’s funny, a while back a friend of mine expressed surprise when I said that epilepsy scares me more than hydrocephalus.  This episode gave me a chance to think about that again, and reconfirmed my reasons behind that feeling.  Usually, with hydrocephalus, if your shunt has an infection or malfunctions for some reason, you have symptoms, some kind of warning.  And there is an answer (shunt problem) and a possible fix (shunt replacement).  But epilepsy is a strange beast.  It sometimes strikes without warning, when everything on the surface seems fine, and there is no answer as to why.  I wish that epilepsy was an opponent we never had to face.  It doesn’t play fair, and makes up the rules as it goes along.  We don’t want to play anymore, but we have no say.  Epilepsy sucks!