Ella Update

It's been a while since I wrote about Ella's progress. It's probably time to do so.

First of all, she's amazing. Seriously. I am blown away by how far she has come. There were days early on in the diagnosis of infantile spasms where it was unclear whether she would ever walk or talk, interact with us, be aware of her surroundings, and so on. She has accomplished all that and more in the two years since being diagnosed. Sometimes we just laugh when she does something new because it's just such a joy to see. Yes, she is still delayed but is making gains all the time. I told somebody the other day that Ella is not on "the" curve, but she's on her own curve and is still trending upward. I think I'll use that explanation from now on--it's the next best thing to observing her for yourself.

Being around Ella is one of the great joys of my life. I think I appreciate every little thing more because I take nothing for granted. That's not to say that she doesn't wear me out because sometimes she does, and the girl can throw a killer fit which is less than endearing, but on the whole there is much to smile about.

The spasms are a distant memory now. Ella passed the two-year mark of spasms-cessation a couple of weeks ago. Two years is a magical number in the epilepsy world (much like cancer). It makes me breathe a little easier to know that both her chronological age and the time since her last spasm combine to make return of the IS very unlikely.

But there's still work to be done. Since March, Ella has been having a new type of seizure, complex partials. Always within about ten minutes of waking, she gets a funny look on her face, breathes deeper and makes a distinct noise with it (what often tips me off when all else too subtle, i.e. when she's sitting in her carseat), often loses her balance if she's standing or sitting, and occasionally kicks one leg repetitively. The seizures only last for several moments, perhaps up to a minute or two, and when she comes out of them it takes her a little while to recover--which I define as being able to respond with words to my questions.

Over the course of the last four months, the frequency of these seizures has varied between daily to 15 days apart. We've tried increases in her doses of keppra, a second medication which failed (trileptal-- didn't seem to improve things and had undesirable side effects of extreme drowsiness and drooling), and we are now going to add lamictal as soon as the pharmacy gets everything approved with our insurance. We've also had her in for two more EEGs, the last of which was puzzling enough with it's change from abnormal spikes on the right (coinciding with her malformation) to showing spikes only on the left that it bought her a trip to Children's for another MRI, which she had on Thursday.

Here's the kicker: the scan this time around was normal. As in, no visible polymicrogyria in the right frontal lobe or anywhere else. Normal! I was expecting almost anything but that. Dr. B was puzzled too. It could mean any number of things. It could be that a miraculous healing has taken place, and we certainly make room for that; PMG (which was seen on her MRI at 5 months of age) doesn't just go away. But it could also mean that either the first scan or the most recent one was interpreted incorrectly. To that end, Dr. B is going to present both scans to the entire neuro team at Children's on Thursday to see if they can come to a consensus. We should know something by Friday, one way or the other. Ultimately, whether she has a malformed brain or not, SOMEthing is causing her to seize right now and it is most likely not just her past history of spasms. For that reason, I'd almost be more comfortable with the PMG still being there--as Hamlet put it best we'd "rather bear those ills we have than fly to others that we know not of."

To sum up: no spasms for two plus years, new seizures we're still trying to control, surprising MRI results awaiting further clarification, and amazing developmental progress.

So there ya go. And if you made it this far, here's a little photographic reward for you:

♦