A Question About Seizures

I need your help.

Tonight Michelle was missing from her bed and after a quick search, we found her downstairs but totally non verbal. She was able to follow directions but she seemed to be in a dazed state, doing what we tell her but unable to respond.

Normally we look at this as how she acts after a Nocturnal Grand Mal seizure. However in this case, there was no evidence of this, her bedding was on the ground by her bed but no physical signs on her body suggests any seizure occurred. There were no marks on her face or body that she may have fallen out of bed, she didn't wet herself and no one heard any sounds that we would normally hear when she has a seizure. As of now she is able to verbally respond and she's sleeping in her bed again.

Maybe I'm looking too much into this, or maybe she just had a sleep walking. I can't find any evidence of a seizure that looks like sleep walking nor is there any documented reports of a connection between sleepwalking and seizures. Has anyone experienced something like this? Please share this post or comment if you have seen something like this.

Thank you.

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.

A Fate Worse Than Death?

This week I was getting my daughter ready for school and I began to wonder how life would have been if she didn’t have TSC. I realized that next week would have been the week she should have graduated from High School. I imagined how life was going to be. Would she be driving a car now, dating, after school job, touring colleges? So many things that I looked forward to when she was an infant that wouldn’t be, even things I was dreading like partying and friends I didn’t like that ended up being a bad influence on her. I wondered if she would have wanted to live with her mother and want little to do with me, like her brother did last year. I even worried about having the talk and hoping that when it came to sex, she would be responsible. So many things that won’t happen, so many milestones missed and so many bullets dodged. With that said, you would read this as if I described to you that my daughter had died at a young age. But she’s alive and well, currently playing with a toy in the dining room as I write this.

The other day I saw a post on Facebook about vaccinations and autism. Instead of the normal controversy of it being the cause. It said something along the line of, “Is having a child with autism worse than death”? It hit me pretty hard because years ago I resented my daughter and mourned all those expectations I had of her. I was terrified that I would raise her like a child for the rest of her life and everything I had pictured in her life the moment I first held her in my arms, was gone, stolen from us all. Was her condition a fate worse than death?

It took a long time for me to see that it isn’t. I was wrong because I still see her life as what I think it should be. She is still happy, she laughs, she dances, she colors, she has friends and she is loved by so many people.  She has her good days and her bad ones. She is still a moody teenager who is argumentative and sometimes she’ll spend all day in her room. She’s different by how she talks and acts. But past that, she’s still my teenage daughter. I need to be reminded of that sometimes.

There are things that will bother me. The stares, kids laughing at her and most of all people telling me how strong I am for raising her because they don’t know if they would have the strength. Those people make me angry because they are the type that sees a disability as the worst thing to happen.

As I look at her right now while she watched Mulan for the 200^th time, I’m just happy I’m  her dad.

Need a break

With every parent there is a time when you need a break from your children. Maybe a date night, an adult getaway, an overnight sleepover that means as much to you as it does for your children. But to parents with special needs children, a get away is few and far between.

In the past eighteen months, I have had one overnight without my daughter. The time before that was March of last year when I begged for a weekend off because I was going to be out of town. Sometimes I feel selfish for saying this but, having some time away from my daughter longer than a few hours is needed to keep my sanity. Her mother isn't in the picture and as friends go, she has no one outside of school that she truly spends time with and she has had only one sleepover. My personal /romantic life has suffered, my patience has begun to slip and as cruel as it may sound, I'm beginning to resent her. If she were an average sixteen year old there would be far less issues and a lot less of a hassle in getting away.

My options are family, a few friends and the local Regional Center, which offers respite care for up to 24 hours. The respite care I've never used, friends are great for a few hours and my family makes it more of a bourdon to even ask them. The fact is, I might be able to do this each day, every day, on my own, but my parents can't handle her in the long term. And the times they watch her for the day, I was told after that I use them too often. This sadly is a "Catch 22" because when I ask friends to watch her for the same time I am again guilt tripped for keeping them away from their granddaughter. For the time being, I doubt I will have a 24 hour period from parenting until they move away, which isn't happening any time soon.

All I want is a weekend. Two nights free to do as I please. Maybe go backpacking, or a trip to Vegas or San Francisco. I don't want to resent her because I feel trapped. Michelle's major health issues are under control. Although mentally she can't she care of herself, she's not a difficult child to deal with and is often compared to other, regularly developed children as well behaved. It shouldn't be as big of an issue as it seems.

But because she's different, most people including friends and family are afraid to deal with her. And that's another story all together.

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.

Socializing and Expectations

It has been three months since Michelle was hospitalized for her seizures and so far she’s been seizure free. Her appetite has returned and her mood swings are decreasing. Things are now returning to normal, or at least my normal.

On a normal day Michelle never leaves the house unless we were going out somewhere as a family. The kids in our neighborhood know her but they’ve never had any real interaction with her except when we’re at the community pool. But even then, her language skills prevent her from having any real conversation with anyone. At school, her best friend is a girl named Jessica who is a non-verbal autistic. On the outside they look like an odd couple, Michelle who can talk all day in her own syntax of English and Jessica whose emotional responses are made by grunts, screams and rapid movements. They have no dialog with each other but they bond better than most friends can. This is the one place Michelle has real social interaction.

As much as I should see this as a great thing, I sometimes see it as a reality adjustment. Michelle isn’t the average 15 year old girl I thought I was going to raise when she was born. I expected that Michelle would be starting the 10^th grade, have a group of friends who she’d be hanging out with, boys she’d have a crush on and we would have our bonding moments and arguments over rules I set in a futile attempt at being overprotective. The reality is that all I have are bonding moments and arguments and those are still not what I expected. Bonding moments I have are accompanied by items to distract her when she doesn’t want to do something with me anymore because of a short attention span. And arguments are based on me telling her no or when she has a meltdown (which I guess is like a normal teenager).

In the end I have to remind myself that although things aren’t anywhere near what I expected, it’s still parenthood. There are several adjustments I need to make as she grows up but it’s never changed the fact that she’s my daughter and I love her. Now I just need to figure out what we’re going to do next.

Teaching Puberty

            Being a single dad to Michelle means that a lot of things that should have been the “Mother’s Job” now fall unto me. Since puberty I’ve had advice and help from friends such as bra shopping and how to teach Michelle how to use a pad during that time of the month. Which leads me to this problem; Michelle has been having her period for a year now and even though she knows how to apply a pad, she still freaks out about it like she’s injured.

            This isn’t something you can simply have a quick talk about becoming a woman to her. Since her mentality is somewhere around age 5 she freaks out every single time and never acknowledges that we’ve talked about this before. The best advice I’ve had so far is to keep telling her about this every month and hope that one day it will trigger. I’m hoping that there might be another option out there that I haven’t considered and with any luck, this entry may give me someone who has gone though this and can help me teach her that this isn’t something to freak out about all the time. Her periods last 3 days now and putting her on birth control to stop or lessen her periods is not an option because she’s on other medications as well and I have no idea what hormone altering medicines with affect her while she’s on her anti-seizure meds. With that said I’m open to your input.