Seizures

            One of the biggest issues with Michelle’s condition has been her seizures. They are the most life threatening symptom that she has had to deal with so far and the scariest for the rest of us to watch and deal with. With constant trips to see doctors, specialists and emergency rooms, the fear is only exceeded by frustration of knowing not enough is being done.

Michelle while hospitalized in 2013

            Michelle began having seizures at age 2, but at the time we had no idea what they were. At that time I thought seizures were only the Tonic Clonic or Grand Mal seizures you see on TV and these were more like hiccups and blank stares, which ended up being Clonic and Absence seizures. Other types of seizure also appeared over the years in different forms that we assumed were anything other than a seizure attributed to being tired or cold or anything except seizures. It wasn’t until she was 5, when she had one in front of her doctor that we were told what they really were and we missed 3 years to act on them.

According to Epilepsy.com there are about 40 types of seizures and from that list, Michelle has had 13 of them. While she was younger, most of them were small and simple, nothing too scary, but we wondered what kind of an effect they had on her in the long run. Would they get worse? Would they make her worse? Would they kill her? There were so many thoughts running in my head and there were times my worst fears played out.

One time she had a seizure upstairs while I was downstairs and I didn’t know until after the fact. The position she was in prevented her from breathing. I had no clue what was happening until I came upstairs and saw her eyes and the sign she had been without oxygen for a time. I had her checked out and she was fine. She dodged a bullet.

Another time at school in the pool she had a seizure and went under water. Thankfully there were teachers next to her and were able to get her out in a few seconds. Another trip to the ER confirmed she had taken a small amount of water in her lungs. She was OK but she stayed home for 5 days with a prescription of high grade antibiotics to prevent pneumonia. Other incidences have occurred, such as her falling out of bed, but my mind often races to the worst each time it happens.

For some time her seizures had been under control after her hospitalization 3 years ago. However last September they returned with Nocturnal Seizures, Grand Mals that occur while she is asleep. Appointments were made immediately and my wishful thinking was in overdrive. She was seen by her pediatric neurologist from one of the top children’s hospitals in the country and we began the slow process of medication adjustments and logging each seizure.

Michelle: Tonic Clonic

May, 27 04:53

37 seconds

Fell off the bed, wet herself, was able to speak again at 05:07

I’ve become a very light sleeper because of this. Every thump, every strange noise coming from her direction I jump to. I’m by her side each time, making sure she can breathe, she’s not injured, stripping her bed, changing her sheets and making sure she can get up and be cleaned up if necessary.

The only thing I don’t do anymore is panic. I’m well passed that. After all this time I know what’s to be expected. I’m mentally counting the moment I hear a noise whether it’s a seizure or not and all I can do is wait it out. I’m totally helpless when they occur and although I’ve accepted this, I’m nowhere near alright with it. All I can do is what I’m already doing and hope the next medication adjustment is the right one and they stop again.

Patience Please

Michelle has been experiencing far too many emotional meltdowns than I’m used to. These meltdowns happen at random moments, without warning and constantly shift on severity. The more I think I have figured out the culprit to what the cause might be, I’m quickly proven wrong. Chalk it up to teenaged hormones, her medication, the TSC messing with her brain or all of the above but in the end it still comes down to I’m a guy trying to figure out how a woman thinks. . . . On an insane level.

            This morning alone I have seen two meltdowns and one manic laughing fit within a span of five hours. The first meltdown was at 6:30 this morning. She came into my room bawling in tears and screaming like she had a night terror bordering on an encounter with Freddy Kruger. Instead the cause had to do something about Woody from Toy Story, but she was babbling so much that I have no idea why. I held her and calmed her down until I convinced her that she had to go back to bed because the sun wasn’t even up yet. She complied and we were able to get another hour of sleep before she burst in my room again laughing hysterically. Now these aren’t so bad although they can be a little creepy at times. Being woken up in the middle of the night to a kid maniacally laughing is more unsettling than having it happen at four in the afternoon. Finally her last meltdown this morning was her yelling at something in the kitchen. After a while I finally got her to calm down enough for her to tell me that she wanted her to go away. I thought it had to do with one of the photos on the refrigerator so I had to get up and show me which on. It turns out it had nothing to do with a photo but the digital clock next to them that no longer had the number “5”. That took a while to calm her down.

            It’s frustrating at times dealing with her. Although she is mentally challenged, there are other parts that are your basic teenager. Back talking is the newest teenaged action she’s learned. More recently I am no longer “Dad” but instead I’m the evil oppressor that only says no to make her life miserable. Even when I try to explain the reason I’m saying no or go against her wishes, she will hear none of it. Those moments she’s a typical teenager. Unfortunately there is only so much I can deal with and I’ve yelled back.

            Yes I’ve felt like a jerk right after, especially when I’ve said something mean in anger. It makes it worse when I realize I’m yelling at a teenager who’s mentally at the level of a 5 year old and not a fifteen year old, angst filled young woman. It’s the equivalent of kicking a puppy.

            What have I learned? I make mistakes, I screw up and I have to learn from them. The first thing I learned was from advice by my mother. Sometimes there is nothing you can say that will make it better but showing that you’re there for her is all she wants. I also learned that a long hug works most of the time and finally there are times she needs to have a meltdown and she needs the space to do it. Basically she needs what we all need. And I learned that I need to just have patience. Sometimes more than usual.