Raising early intervention and autism awareness through our amazing journey

Getting personal

We have got to win our fight for our son’s Medicaid EDCD Waiver. Winning will allow us to resume our regularly scheduled therapies as well as grant access to respite care. We could really use the respite care.

I have epilepsy. The epilepsy causes abnormal activity in my brain. I call it “dead brain’.  My neurologist calls it “chronic sleep deprivation”.  That was a couple days ago at my appointment.

I explained to my neurologist that I had recently visited my eye doctor to check my vision because it had been a bit blurry.  I was feeling nauseous for no reason.  I have been waking up with migraines, forgetful, unable to focus, difficulty completing tasks that used to be simple, trouble putting a complete sentence together, and the most scary, I have had twitching during the day which could be a sign of seizure activity breaking through.

“What’s your sleep been like?” he asked.  “I miss sleep” I said.

And then he started to explain chronic sleep deprivation.  It is actually more serious than I could imagine- very detrimental to your health, especially for someone with epilepsy.  He couldn’t write a script for more hours, but he would surely follow up to check my epilepsy medication levels.  He stated that somehow I was going to have to find a way to sleep if I was interested in providing the best care I can for my son…or interested in functioning.

Here’s an example of how things are:

“Have you seen Layla?” I asked my neighbor in a phone call after being awake; only sleeping for three hours in a twenty-four hour period which has been the usual.

“I let her out to do her business.  I’ve called her name and she’s not in the yard.  Have you seen her in your yard or near the road?” I asked.

She said she hadn’t but she’d keep an eye out.  That was around 8am last Saturday.  My next door neighbor and I had a date to take the kids to the berry farm at 9:30am and I was determined to fulfill my commitment even though I was so sleepy I couldn’t think.  Dead brain.

“Did you ever find Layla? she asked.

Embarrassingly, I answered her question.  I had walked upstairs to let my husband know I was leaving, and to let him know that the neighbor wanted to play some golf if he was up for it.  (He was sleeping since his shift work was complete for the time being).  And guess what?  Layla was in the bed with him.  She hadn’t run away, nor had I even let her outside.  I was probably in a dream-like state for a moment (micro-sleep) and/or I was truly hallucinating.  I didn’t realize it at the time, but after hearing my neurologist’s explanation it’s actually very scary.

Thankfully my neighbor and I are best friends so she wasn’t surprised.  I tell her everything and she knew about our son’s sleep problems.

Did you know that long-term chronic sleep deprivation causes death in lab rats?  I do now after my visit with my neurologist…as if there weren’t already a lack of comfort before my appointment.

Which brings me back to Medicaid.  The EDCD Waiver would provide respite care since taking care of a special needs child can be exhausting.  It would allow us to actually get sleep so that we can function and better support our son. He needs support from parents that are 100% engaged and present in whatever the current activity is. He more than needs that, we owe it to him. If we aren’t on our A-game, we are not helping him to the fullest extent of our abilities, and we cannot accept that.

And now for a bit more about my epilepsy…

I’ve had epilepsy since I was a teenager; seventeen years old to be exact.  I suffered my first grand mal seizure in front of my parents one morning.  The doctors don’t have an explanation.  Thankfully for my parents, the brain scans revealed no serious issue.  The test that confirmed epilepsy was called an EEG which is short for electroencephalogram, to detect the presence or absence of photoparoxysmal response (PPR) to intermittent photic stimulation.  To explain the test in simple terms- I had a bunch of electrodes attached to my head like Frankenstein while I stared at a flashing light that was one inch away from my eyes.  They could detect seizure activity from the electrodes on my head.  The doctor explained to my parents that I most likely had been having seizure activity in my sleep for awhile.  My symptoms and seizures, along with the positive tests, are actually a pretty “textbook”  definition for juvenile myoclonic epilepsy which starts in childhood or adolescence.

So I take medication everyday and I will for the rest of my life.  There are certain things that trigger my seizures- poor diet, stress, and lack of sleep., as well as flashing lights in video games, movies, fireworks, concerts or anything that has any type of flicker.  I very rarely go to see a movie in a theatre unless it’s a low key drama with mostly dialogue. I try and stay away from these as much as possible, but I’m taking a chance when I see Taylor Swift with my daughters this summer.  I’ll be the mom in the cool shades, and quite possibly the mom with her eye’s closed.

Back to our little man…

There have been people that have asked why our son isn’t sleeping since he was put on medication.  I mean, surely that would work, right?  I guess I can compare it to a medication that either you or I take.  I know with my epilepsy, it took quite awhile to find a medication and dose that worked, and even now it needs to be adjusted from time to time.  There are some nights (very few) that he sleeps through the night.  Then the next night he is awake for the majority.  We just roll the dice each night after giving him his medication, smile and say, “Well, maybe we will get some sleep tonight”.

*And here’s to hoping you all have a good night’s sleep 😉

Thanks for reading.  Until next time..



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