A New Label

Today, at 2:00, MC will have his fifth EEG to determine what effect the vitamin b6 has had on his brain.

An EEG that will, apparently, tell us if he has transitioned to "normal." 

Nice, right? A machine is going to tell me if my SNandMCK is "normal." (I found the internet acronym label on a Special Needs and Medically Complex Kids forum the other day, and I've been dying to use it in an upcoming post. Doesn't it sound fun if you say it really fast?)

SNandMCK

I'm not even sure if I'm allowed to use the whole thing when referring to MC, or if I'm just supposed to call him a MCK, but while I've seen SNs stand alone, I've yet to see any solo MCKs. Which makes me wonder if there aren't enough MCKs in the world to have their own forum, thus the need to group them with SNs, or if in the alternative, the MCKs always have additional SNs which is what puts the "C" in MCKs in the first place. I will look it up and get back to you...

(Coincidentally, I just read this post as I was getting ready to write my own, and learned that I should not even be writing a post about "normal." Fortunately, I don't think I have nearly enough SNandMCK readers at this point that I seriously risk offending someone, but if I do, apologies in advance. No time to edit today.)

Anyways, back in August, MC had his first EEG in India. I was told that it had come back very abnormal. Emphasis on the very. At the time, I wrote that for Duane and myself, it didn't really matter what that test said. Our son would always be normal for our son.

But what I shortly realized is that it very much mattered what that test said. Not to us... but to the medical community. Without that piece of paper labeling my son as very abnormal, there's a good chance I would still be sitting in India. Or worse yet, I would have finally made it home... sans my MC.

America loves to label. And it's really important that you have a label. It's really important, particularly for already labeled SNandMCKs, as it is often dispositive of the medical care that they will receive. 

If MC's test today shows that he is still "very abnormal," or that he has maybe graduated to just plain "abnormal," then it would mean that he retains his current label of having Ohtahara Syndrome-- a seizure disorder that is estimated to affect .02 % of the epileptic population which is estimated to affect .05% of the general population. A seizure disorder characterized by intractable seizures and early death as a result of there being no seizure resolution. Not surprisingly, there is little medical community interest in this disorder.

If, however, it shows that he is "normal," then he will be labeled with a new seizure disorder called Pyridoxine Dependent Seizure Disorder with an estimated 1 in 800,000 birth incidence. A seizure disorder characterized by intractable seizures that can be resolved through vitamin therapy. Not surprisingly, there is more medical community interest in this disorder.

You follow? Rare disease with no known resolution equals abnormal. Rar-er disease with known resolution equals normal. The former equals no medical community interest. The latter equals interest.

Of course, kids who have the latter, can still have seizures when they are sick, stressed, overstimulated by their twin sister, or perhaps, venturing outside for only the second time ever in their ten months of life, in which case they would start seizing, and could mistakenly, by a machine, be labeled as "still abnormal" despite the fact that they are actually "normal."

Which means that as a Mom, I don't give a damn whether this test shows that my kid is "normal." I am well aware that our journey with MC has, and will likely always be, anything but normal. 

Instead of focusing on his label, I have always worked to get MC treated based on mine and his caretakers observations of his needs. In turn, I have given the machine's observations the weight that they deserve.

But as an Advocate for my labeled SNandMCK, I'd go so far as to say that MC's life depends on this test, as a finding of "normal" could trigger some much sought after attention from the medical community necessary to treat the recent changes that we have observed of our MC.

For this reason I hope that today brings him a new label.