Completely Exhausted

I don’t know if it’s possible to experience true sleep deprivation without being a parent.

I thought once we got through the infant stage and Jax started sleeping through the night that the unending sleepless nights would in fact end. It’s part of the reason I was sure I had made the right decision not to have any more children. Why would I go back to those sleepless nights when I have an adorable little boy (exactly what I wanted) that was finally sleeping through the night?

Well, I knew there would be sleepless nights here and there, what with childhood illnesses, nightmares, etc. but every night…I was not prepared to revisit.

Welcome to epilepsy!

Jax rarely falls asleep before 11pm, often wakes up between 2 and 4am and crawls in bed with me, and requires an act of God to get up in the morning. 

The first few weeks on Jackson’s new anti-seizure medication were blissful. He was asleep in less than 30 minutes and mostly slept through the night. He was still hard to wake up and was often cranky and tired in the morning, but I figured this was his adorable personality and just cringed in anticipation of the teenage years.

Well, the honeymoon of sleep inducing side effects is over…sadly.

I called Jackson’s neuro today and begged for help with the sleep problems. He suggested Melatonin. So I rushed to the store to buy it and hoped for a quiet, early to bed night tonight.

Then I started freaking out. I mean sleep aids are always controversial and this is a sleep aid I’m giving to my kid!

So I went to the epilepsy foundation forum (the forum has been a life saver…as well as a sanity saver) and happened upon a post on insomnia. Melatonin was the number one response for helping kids get to sleep and helping them stay asleep! Phew, what a relief!

But I also read a lot about other issues parents have with their kids and nocturnal seizures. I don’t trust myself enough yet to know what’s going on and what’s a seizure and what’s not. The other night, Jax tremored the entire night. His legs and arms would shoot out like he was going into a tonic clonic seizure and then they would relax a minute or two later. This went on all night long. It wasn’t until a day or two later that I was convinced that yes, he was having nocturnal seizures that night. This was confirmed by another scared parent on the forum that described exactly the same thing.

Jackson grinds his teeth in his sleep, he has since he had two teeth to grind together! This was also something described by the other parents as a symptom of nocturnal seizures. Which will be something that I will be bringing to the attention of his neuro.

These forums are great because they often either confirm what I’m thinking, feeling, or worried about or they offer some insight into something that I never thought twice about that should be noted and brought to the attention of his doctors.

So, what’s the lesson here? Well, there are a few:

1. I can actually put together a coherent blog posting with very little sleep.

2. I should give myself credit for knowing more than I think I do and trusting my instincts as a mom.

3. I should really give myself credit for knowing where to go to get the information I need and going there in order to feel educated, sane, and a part of the comforting and understanding community.

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