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.

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.

My Daughter has Tuberous Sclerosis Complex

My name is Liam Watson and I am a single father to a child with Tuberous Sclerosis Complex. My daughter Michelle is 15 years old, tall, beautiful girl with brown hair who loves attention and Disney movies. She is I the autistic spectrum with a mentality of a 5 year old and is prone to seizures. I have been her only parent since she was 5 years old and her mother lost joint custody of her and with the exception of friends occasionally helping with advice or favors of babysitting, I’m essentially on my own.

Michelle and I, May 2013

            A little background into my daughter’s condition is that according to the Nation Institute of Neurological Disorders and Stroke (NINDS), Tuberous Sclerosis Complex or TSC is multi-system genetic disease that causes tumors to grow on the brain and other vital organs that is caused from the mutation of TSC-1 and TSC-2 genes. This has been known to affect brain function in the Autism Spectrum and more than likely causing a seizure disorder. The first symptoms usually spotted are ash leaf spots on the body and seizures of all types. It can also affect the heart, lungs, kidneys and eyes.

Michelle at 22 months, You can see her ash leaf spots on her arms

            In Michelle’s case, TSC affects her with ash leaf spots all over her skin, Autism Spectrum Disorder and seizures of all types. However when she was born, no one brought up that the ash leaf spots were a sign of TSC. When she was two she began infantile spasms that we thought were hiccups. We had never heard of these types of seizures before and never thought to have them checked out. It wasn’t until she was 3 that she had her first clonic seizure where we first knew something was wrong. Around the same time we began to notice she was falling behind in learning. Her speech began to show signs of problems, syntax issues and pronoun mistakes. We dreaded it being autism but all the signs we were told to look for weren’t showing up. Her first doctor suggested that we read to her constantly and take her to church to give her a sense of community and family structure. Never once did he give any indication of it being autism.

            By age 5, we enrolled her into kindergarten at a local parochial school, where her disruptive behavior caused them to remove her after 1 week. Following that we enrolled her into another private school where she lasted a day. My decision was to hold her out another year while we try to get her behavior under control and see if she needs medical help. After some time her doctor who suggested church finally referred her to a pediatric neurologist. He was the first to mention TSC to us.

            In 2003 there was very little information of TSC and after a series of tests ranging from an MRI to ophthalmology exam on her eyes to a sonogram on her heart and kidneys all showing nothing out of the ordinary, TSC was dismissed as a possible diagnosis. The following year we enrolled her in public school and they gave her a psychological check and tested her for autism. In the end of those exams she was characterized as Other Handicap Indicated because they knew something was wrong but had no idea.  

            Over the next couple of years her seizures began to get worse. She had begun having tonic seizures almost daily along with occasional clonic or drop seizures that began to change our focus to controlling the seizures. Each time the neurologists would bring up TSC but after reviewing the previous tests they would dismiss it again. They now wanted to get the seizures under control before trying to treat Michelle’s learning disabilities which were changing each day as well. She was given Depakote, Oxcarbazepine, Risperdal and finally Phenalbarbatol. It was the final drug that actually began to slow down the seizures including the tonic/clonic or Grand Mal seizures she had begun having.

            In January of last year, while in the school swimming pool, she had a grand mal seizure and went under water. She was pulled out of the water quickly and when checked out at the emergency room, she was ok aside from some water in the lungs. In September she had 4 grand mal seizures in less than two hours prompting another run to the ER, this time we were out of town and the hospital we were at ran another MRI and CT scan where they noticed some calcification in her brain where they once again returned to TSC. She was given a loader of Phenalbarbatol and her regular dose was raised to prevent it from happening again.

Her seizures were still happening but not as often as before until three weeks ago. Her tonic seizures, which would happen in the morning if she had not slept enough or was stressed out, began to happen at rapid intervals. By noon that day I took her into the ER at our local hospital. After several hours there, she was given another loader of Phenalbarbatol and a milligram of Lorazapam and her seizures were under control again. The following day we went to her primary care physician who added Lorazapam to her regiment and put in a referral for a specialist. Five days later she had another seizure attack.

This time I returned her to our local ER where my girlfriend joined us and with her knowledge in medicine from her career as a case manager for hospitals, she was able to talk to the staff and ask the questions I never thought to ask. I learned that our local hospital didn’t have a pediatric wing to admit her to and they intended to send us home as soon as the seizures were under control. This time however, the seizures weren’t controlled with Phenalbarbatol and Lorazapam. My girlfriend was able to convince the attending physician to transfer Michelle to Loma Linda University Medical Center, which was the nearest children’s hospital and she was admitted.

Michelle at Loma Linda University Children's Hospital, May 2013

Over the next 5 days, Michelle was hooked up to an EEG and they began to monitor her seizure activity, which was averaging to over 100 seizures a day and at their worst were happening every 45 seconds. Finally they found the right combination of medicines that have managed to control her seizures and at the same time begun a battery of tests on her heart, brain and abdomen for any other signs of TSC. Her brain shows signs of calcification from previous lesions but her heart and kidneys are clear for now. She was sent home the day before Mothers Day and after a week has not had one seizure that we’ve noticed. We’re watching her closely and if they begin again, I’ll be terrified wondering what will happen next.

As of now our only issue is the side effects from the medicines she’s one. Her Phenalbarbatol dose has been doubled and added to it are Topamaz and Dilantin. The current side effects are loss of appetite and bizarre mood swings which we can deal with rather than the alternative. We are learning to be patient with these changes and at the same time trying to keep her healthy and show her that she isn’t alone.

Michelle's final day in Loma Linda Children's Hospital

Michelle currently attends a special education school and is connected with the Inland Regional Center. On occasion we attend outings with the Inland Empire Autism Society and I’ve only recently been informed of the Tuberous Sclerosis Alliance that I will be looking into for help. What I discover will be added to my blog in future posts. I am writing this blog to help other parents of children with TSC to know what they can possibly expect from their child although the odds of someone contracting both developmental issues and seizure disorders are rare. I’m also writing this for my own personal benefit as I document some of the hurdles we’re jumping through from the medical field of doctors and insurance companies, to the schools and social disability programs. In time I’m hoping there will be more information about TSC that will help Michelle and others like her. Maybe this blog and others like it will raise more awareness than what little I’ve learned about over the years. Time will tell.