Saturday, January 16, 2010

Little Kids Should Not Have Seizures. Not.

Charlotte has been on medication to control seizures for more than two years. Before her fifth birthday, she'd had two EEGs and an MRI, both of which have risks--EEG requires sleep deprivation and, for younger kids, the MRI requires anesthesia. I'm not going to equate sleep deprivation with the risks of anesthesia in general, but anyone who has ever seen me sans sleep will understand why there is risk attached. If you haven't had the pleasure, let's just say that that particular irritability trigger is one which Charlotte comes by honestly.

Over the past two years, we've gradually had to increase the medication to adjust for growth spurts. The last time we did this was between Thanksgiving and Christmas. We spent 10 days on the East Coast for winter break, and, not long after we returned, Charlotte had a seizure. And then another. And another.

I should mention that her seizures have always been very small. In fact, for a long time, we didn't know she was having them. But I perfectly remember the first time I saw one. She wasn't yet a year old. She was wearing a navy blue outfit dotted with little white anchors, with a white sailor collar. She was on her stomach on the floor and had just pushed herself up onto her arms when she started shaking. Part of my brain thought, "That looks like a seizure." The rest of my brain rejected that thought outright, insisting instead that it was the exertion of pushing herself up. It wasn't a seizure. No one else saw it. It didn't happen again. The pediatrician thought it was, yes, the exertion of pushing herself up.

Charlotte was born six weeks early and very small--three pounds, 11 ounces. She spent two weeks in the NICU to get her weight up to FOUR POUNDS. They send them home at four pounds. Jeezus, talk about scary. But she never needed any other intervention--no lung, heart, or other issues. Nothing to explain why she wouldn't walk until she was almost two or talk until she was almost three, or why, at five, her fine motor skills would be below average and she'd still be in speech therapy.

In the week after we got home from the East Coast, Charlotte had three or four seizures. We noted it, but decided to take the "watch and see" approach, as she typically has more seizures when she's over-tired. And then the day after her fifth birthday, they started coming, one after the other after the other. Over the course of the morning, she had ten. Ten. She'd never had that many in an entire day. Ever.

A quick, slightly (ha!) panicked call to the neurologist resulted in a new medication that had to be started that very day, plus an urgent request for an MRI through Lucile Packard Childrens Hospital--they are the only place to go if you need to put a kid under for an MRI. We couldn't get in for the MRI until yesterday, almost 10 days after the episode, but they had to bump someone else, so I couldn't really complain about it. Loudly.

The MRI was scheduled for 10:00am, but we had to arrive at 8:30 to complete registration and all of the pre-op stuff--basically to make sure she wasn't sick and to get a current height and weight. Other than me accidentally getting a few deep breaths of the anesthesia (more on that later, perhaps), the whole thing went well. The hardest part of both MRIs was waiting for Charlotte to wake up. She likes her sleep anyway (again, comes by that honestly), and so uses this as an excellent opportunity to get in an extra hour. Both times the nurse had to wake her up after I sat for the hour, watching that tiny body, making sure of the exhale and inhale, happy to see the slight flush of pink that kept her suddenly, amazingly translucent skin from looking too doll-like.

But awake she finally did, and recovered as well as she has from anything before: from the previous MRI, from getting stitches in her head, from various colds, hives, bumps, bruises and scratches--none of which she ever complains about. In other words, she rejected outright Nurse Jenn's instructions that she have nothing but clear liquids and popcicles for a few hours, then maybe yogurt or ice cream before moving on to toast or rice or crackers.

No. Charlotte wanted Goldfish. And chocolate. And pizza. After several minutes of "discussion," we "compromised" on the Goldfish: she got one bowl instead of two. And then we agreed that if she felt as though the milk was going to make her vomit, she knew where the bathroom was. I did get her to stick to toast with butter and honey for dinner but was completely unable to convince her of the potential dangers of running, leaping from the furniture, turning cartwheels and dancing with the dog--all of which were also discouraged by Nurse Jenn. I think Charlotte took Nurse Jenn's lack of specificity as a series of very large loopholes ripe for exploitation.

The neurologist promised to call as soon as she heard anything, and she was true to her word. She called me tonight, at 8:00, because she didn't think I'd want to wait the entire weekend to hear that it was unchanged from the MRI a year ago. She also apologized not being able to give me a better answer to "Why did this happen?". Apparently, "Sometimes it just happens" is all they can give you.

So for now, we're back to "watch and see." I get to go back to trying to suppress the instinct to catch her the minute she begins to fall. And Charlotte gets to keep being Charlotte: Funny, tough, sweet, indomitable. And definitey not ever in the mood to have someone catch her if she falls or even notice that anything happened.


Number Nine said...

You are a heartbreakingly beautiful writer. Your story of Charlotte is poignant, funny, frightening and hopeful. Thank you for sharing this.

Melanie K said...

Thank you so much! I was going to play it off with a leetle joke but, this once, I will leave it at "thank you" :)

Pranayama mama said...

that is one scary story. poor little thing :(