So I have been worried about PanKwake’s sleep. After my interference with her natural sleep cycle last week…in order to accommodate her party…it has been all over the place this week. With a couple of five and six hour nights.
The thing is that as always I try to balance her AWEtism/Pathological Demand Avoidance and her epilepsy. That has been a hard fought battle for most of her life. We have had to stop more than one anti-epileptic drug because it made her behaviors worse. At times even life-threatening…run into the street.
Of course the AWEtism makes her sleep patterns irregular. And sleep deprivation or illness has been the trigger for every single seizure this child ever had. In fact, when she was younger and in school, she had them nightly in her sleep.
Since taking her off of Melatonin and allowing her body to self-regulate her sleep, she has had only one confirmed and one possible seizure. Both of those under stress and due to lack of sleep. Now I know that is anecdotal evidence only…and I cannot infer a correlation. It could just as easily be that she is outgrowing the epilepsy independent of her sleep cycle.
But still I worry!!!
You see we are a perfect storm…
My mother had epilepsy. One of my earliest memories is watching her fit. And thinking…My Mommy is gonna die. Every time that PanKwake has a seizure my mind goes back to that day and I become that little six year old girl. Except this is even worse because it is…My daughter is gonna die.
Yes, strictly scientifically the odds are in our favor. Death during seizures is rare. Either from Status Epilepticus…meaning they cannot get the seizures to stop. This usually happens in those with more complex forms of epilepsy or other medical conditions. Or from what is called SUDEP…Sudden Unexplained Death in Epilepsy. Overall, only about one in 400 die from epilepsy related causes.
But when your step-sister has died from SUDEP…well, odds mean NOTHING when you actually knew someone that did.
So even now…if PanKwake is sleeping well or longer than I expected, I will get up in the middle of the night…just to check on her. Yes, I am paranoid. But I am what Fate has made me. Even my rational mind cannot override fears these deep-set.
So even though it has been almost nine months since the last possible fit…and fifteen months since the confirmed one…I am worried. Thankfully she does not have any of the ‘warning’ signs that I am used to…dark circles under her eyes, slurred speech, clumsiness or even the occasional blank stare (possibly another form of seizure).
Still…even with the Pathological Demand Avoidance…last night when she woke up after only five and a half hours of sleep AGAIN…I just had to mention it. Her response was typical PanKwake…
PanKwake: Mommy, did you know that people with brown eyes get on average two hours less sleep than other people?
Me: (Looking skeptical) No.
PanKwake: It’s true. Scientist proved it. And it doesn’t help that I don’t have a sleep schedule.
Me: (Grasping at straws) Do you want one?
PanKwake: (Laughs) You think I could keep a schedule?
Me: If you wanted to. You can do anything you want.
I slipped from the room then. But she had me curious. So this morning I Googled it. And…
While the article is pseudo-science, the sources are some pretty darn reputable ones.
So…did you know that people with brown eyes DO get on average two hours less sleep than those with lighter colored eyes?
Why am I surprised? When will I ever truly learn the super powers of my PanKwake…
And Radical Unschooling!!!!
Live and learn in this #HomeCrazzyHome.