Wednesday, July 20, 2011

The Struggle of My Son

My three year old underwent an EEG today. It's a simple enough procedure and it doesn't hurt a bit. At least, it didn't hurt him. I'm another story altogether. Any parent who has ever watched as their child undergoes any kind of procedure knows the pain I'm referring to. It's that little wrench in your heart that can bring tears to your eyes. We'll have the results in a few days.

As for why he needed the EEG, that's kind of a long story. My son  has these episodes where he just screams, moans, cries and often thrashes and kicks. The first thing everyone says is "temper tantrum". But it's not. This is not the 'I want that toy/cookie/movie and I don't want to be told no' normal tantrum of a preschooler and believe me, I'm well acquainted with those. When these episodes happen it's like he's not there mentally. In other words, he's out of it. He doesn't respond when I speak to him, it's as if he doesn't hear me at all.  If I'm holding him or I try to during these episodes, he doesn't acknowledge it, it's as if he's unaware. And then, suddenly it stops. And he's left looking baffled and upset. He has no idea what just happened to him. If you ask him about it, he doesn't know what you're talking about. And sometimes, he simply stops screaming and is asleep. And for anyone who thinks it still sounds like a normal tantrum, I took videos and those videos had his pediatrician sending him to a Neurologist, and the Neurologist sending him for the EEG. They think it could be seizures. The Neurologist is also concerned about his hearing and referred him to an audiologist.

My son is high needs. What that means, at least in his case, is that literally from the day he was born he wanted to be with me. He would not, no way, no how, doesn't matter what you try, sleep by himself. So, we co-slept. When he slept. He's a poor sleeper. At three years old he still doesn't sleep through the night consistently. On average three nights a week he gets up. Sometimes, more.  He doesn't fall asleep easily, every nap time, every bed time is a struggle. As an infant he literally had to be in my arms at all times. If he wasn't, he would scream himself hoarse until he gagged and gasped for air. He would not, could not calm down until he was in my arms. Even now, he doesn't venture far from me. He gets upset easily. Things have to be just so, a certain way, or he melts down.

He has asthma, and he's very allergic to cats. He's also sensitive to red dye. It makes him so hyper and out of control it's ridiculous. I know there's conflicting research about dyes. Some studies and people say they're fine and cause no harm. And other studies and other people stop just short of labeling them as the root of all evil. All I know is I didn't really think much about them until my son's issues. I mentioned his behavior in a group on CafeMom and several moms mentioned trying to eliminate red dye. I thought it couldn't hurt, so I did. It was like I had a different child. Everyone commented on how much calmer he was. When he does get some red dye by accident, the reaction is immediate. He doesn't speak well either, which is one reason the neurologist is sending him to the audiologist. He had severe jaundice as a baby and the most common side effect is hearing loss. When the neurologist attempted to test his hearing, my son didn't respond.

So, as you can see life has not been easy for him. My poor guy has had it heaped on him. And yet he's still the sweetest, most affectionate kid. He loves airplanes, Egypt, mussels, Phineas and Ferb, cupcakes and cuddling. His eyes light up at the suggestion of popcorn and a movie. He loves to help me bake. And his episodes break my heart. There's nothing I can do for him and it kills me. The confusion in his eyes brings tears to mine. So, I am anxiously awaiting the results of his EEG. If it's seizures, then we'll know what we can do. And if the EEG is clear, our next step is a counselor. One way or another we're going to figure this out.

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