Even More Bad News

Thomas was diagnosed yesterday with Juvenile Myoclonic Epilepsy.

I have not blogged about this--the events leading up to this, because I assumed Thomas would feel it too personal. I was wrong.

Sometime around March, after my dad had his heart attack, Thomas asked me if my body ever jerked. I told him sure, as I'm falling asleep. He asked if it ever jerked or jolted any other time. No. He expressed to me that sometimes his body did that.

I took it as a red flag, but we did not have time to do anything about it.

Fast forward to the beginning of June, when I happened to be in conversation with a neurologist. The doctor was describing the onset of Juvenile Myoclonic Epilepsy. He said it starts out with "jerks" of the body at puberty. They typically happen in the morning, and it is typically the upper body, specifically the arms and head. The minute the doctor said this, the tears poured down my face. I knew. I told him that my 12-year-old had been complaining of the jolts or jerks. He said get him in for an EEG.

I scheduled and EEG immediately, but we were unable to get in until yesterday.

So all this while, during the sadness of dad's death, our own medical emergencies, in the back of my head I was worried sick that my baby had epilepsy. I did not struggle with this alone, I shared it with my best friend, but it has been very difficult.

Yesterday was the big day. Bob, Thomas and I were all three very cranky. We drove to a town an hour away (because we don't live in civilization, and there is no neurologist here) for his EEG. The process took about an hour and a half. The tech took a red grease pencil and tape measure and measured Thomas' head, placing red marks. She then attached the electrodes, 23 of them, to his head. That took awhile. Then the test started.

She said it would be a good thing for Thomas to go to sleep. He did. We sat and watched, and could see the EEG on the computer screen. I had no idea what I was looking at, but I did realize there was an awful lot of activity for a child who was asleep.

At one point in the test, I felt a coughing spree coming on. We were not supposed to talk, and I because I also was having difficulty breathing and I felt like the walls were closing in, I stepped out. Thomas was in safe hands, with his dad and the tech. I went outside for some fresh air, got myself a bottle of water, shed a few tears, composed myself and went back in. Oh yeah, I took a Xanax, too.

When I got back in, Thomas was awake and the tech started the strobe light portion of the test. Apparently, some people with epilepsy are photo-sensitive. Pretty soon the test was over and we escaped for lunch.

While at lunch, I broke my tooth. The top third of the back half of one of my bottom teeth just crumbled. Never a dull moment. Will see my dentist today. That was my root canal tooth -- so it was dead anyway.

We drove back to the clinic for the appointment with the doctor. All three of us were scrunched on a bench waiting for the doctor. I personally had a difficult time breathing due to stress. Thomas was tense and tight as a board. Finally the doctor came in.

My heart sunk when he started talking. He was asking all kinds of questions and not getting to the point. I knew it would be a diagnosis we did not want. Bob and I exchanged a look, because he knew, too.

He asked about learning disabilities and ADD. I don't know about ADD, we've never felt the need to get a diagnosis. I do know Thomas has issues with focus. As for learning disabilities, he was diagnosed as twice exceptional: gifted with learning disabilities. I have never shared that diagnosis with Thomas because I knew the learning disability part would crush him. His disability is processing speed. He does have central auditory processing disorder, which he knows about. So I um'ed, er'ed my way through that conversation, because I wasn't going to blurt out LDs right then. It didn't really matter anyway.

The doctor then said that Thomas had a very small airway. He asked us if Thomas snores, which we said yes. He was going to make a referral to the ENT doctor. He explained he wasn't an ENT, but that he would probably have to have his tonsils out to open up his airway. He suspects sleep apnea with Thomas. He thinks the ENT will want a sleep study.

So then he got to the heart of the matter. In a round about way, he gave us the diagnosis of Juvenile Myoclonic Epilepsy, JME. He started rattling on about medications when Thomas interrupted him. Thomas innocently asked him, "So are you saying I have epilepsy?" The doctor said yes. Thomas's body just went limp. I don't think he heard a lot after that.

At this point it seemed the whole conversation was rushed. I was feeling confused and also I was not thinking clearly enough to ask questions. Bob took over, thankfully, because my brain was shut down. The doctor prescribed a medication.

I was able to get in that Thomas goes to summer camp on Sunday, and should he start the med now or wait. Now. And there are no restrictions on what Thomas can do at camp either, as long as there are lifeguards during swimming and safety equipment on the rock climbing walls and high stuff. There is.

The doctor dropped the ball on explaining epilepsy and what exactly this diagnosis means to Thomas. The only thing he really said to him was that there are far worse things he could have. And there are. But to a 12-year-old, and his parents, this isn't so great. This has life-long consequences. What has started out as jerks has an 80-percent chance of developing into grand mal seizures. However, this is the most controllable form of epilepsy. The chances of a normal life are great.

Normal--define normal. Thomas will not be able to fly an airplane. Thomas will not be able to join the military. The chances are good that his college education will be paid for due to his disability. Many family members have received that benefit. And yes, he is officially disabled.

Epilepsy is no stranger to us. It runs in Bob's family. It's nothing to be ashamed of. Society has long put attached a stigma to it. "Have a fit" is a common expression that stems from epileptic seizures. I thought Thomas would want this kept private. He doesn't, because he wants the world to know that it's just misfiring of the electricity in a brain. That's all. It's a short circuit, if you will.

When we got home yesterday, we talked about what would be likely: the development of grand mal seizures. We talked about the few limitations he would have in life. We talked about the need for quality sleep on a nightly basis--no more staying up late. It was all very overwhelming to Thomas, and he ended up crying--a lot. We all three snuggled in mom and dad's bed, and our puppies joined us. In between tears, we had comic relief from our puppies.

We are on our way to finding our new normal.

This year has just sucked. I don't know how scared I should be with that ENT referral. Thomas isn't looking forward to a possible surgery. Neither am I. We're still mourning the loss of my dad, Thomas's Grandpa Charlie. We still miss our Jerry Lee. We still seem to have this black cloud hanging over our heads.

But we are all thankful that we have good health care, that time will heal all wounds, and life will go on. I worry about Thomas, my 12-year-old boy, and the amount of trauma he has been through this year. It's so much. I'm learning, though, that the has good character, he's remaining positive and accepting things. He's stronger than I could have imagined. He cries when he needs to. He lives in the moment, enjoying time with his friends. He's typical 12, moody and establishing his independence. I am very proud of him.

As he told me last night: I have epilepsy, mom, but it doesn't have to have me.

I think we'll survive.