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.

Those Teenage Events

Today was Michelle’s last day of school and school dance. It’s my one chance a year to dress her up for a school event and normally she’s more excited than I am to attend it. This year she was excited but there were some issues.

Beginning the day before, her emotions seemed to be under better control. There was no fighting, no uncontrollable crying that came out of nowhere and she seemed excited to be going to school. This morning she was a little moody but nothing too bad. Getting her ready in the morning only had one small meltdown of tears, but given today we were getting her ready for a dance it didn't seem like a sign of medication side effects. I got her dressed in a blue strapless dress we borrowed from my girlfriend and I drove her to school.

In hindsight I should have realized that her wearing a strapless dress might be a bad idea. “It seemed like a good idea at the time”, still plays out in my head. She had a couple of wardrobe malfunctions that thankfully weren't seen by anyone and we arrived to her school where she was the center of attention.

Then things started to change. Immediately she started to get upset with people around her, yelling at other students and not wanting to eat breakfast. Her behavior was quickly out of control and I took her out of class and calmed her down. This isn't easy normally and since the new medications were added has become more difficult. The best solution is to hold her till she’s calm enough to listen, get her to take a few deep breaths and negotiate with ultimatums. It doesn't always work but it’s the tactic that has the best odds. Finally she calmed down and she made it through pictures before I left and she had fun at the dance.  

After school she came home is a great mood although a little hyper but within a few minutes the mood swings began and the crying, yelling and throwing tantrums took over. Luckily she was able to be calmed and the rest of the night went smooth.

In my opinion I think she adapting to the medication and the side effects are less and less of an issue as days go by. Some of the emotional outbursts are the same she had before the new medicines but she’s not out of the woods yet. I admit it’s frustrating when she gets like this. I want to walk away sometimes. I sometimes need to quickly remind myself that she’s not an average teenager who I can simple ground and take away privileges hoping she’ll learn from her mistakes. She needs prompting constantly. She needs someone there to calm her down more than an angry parent yelling. There are times I forget that and I apologize. I know her better than most people but I feel lost. I am a single father to a special needs teenage girl. Now I have to deal with all the things about being a teenager, the exploring, the moodiness, the physical changes, having to keep a mental note of when her next period is going to happen and comfort her through the cramps and calm her down when she starts bleeding. I have to buy her first bra and try over and over to teach her how to put it on. I have to constantly remind her to close bedroom doors and keep an eye out for all the bad things in the world. This is something I expected her mom to handle and instead it’s my job to teach her how to use a pad and occasionally help her. This is the age where she was to be independent and all of this was to be a mystery to me. I don’t think I will ever get used to this and I can never expect anyone else to take over. I’m her parent. I have family and friends who give me great advice about what to do but in the end it all falls upon me. I’m never walking away from that but I will always feel awkward throughout this part of her life until she can, if ever, be fully independent. 

Side Effects

All medications Michelle has been prescribed in the month of May

        In the past month Michelle has been prescribed four different medications to control her seizures. She has been hospitalized, monitored, regulated and now we believe we found the right combination. No seizures of any type in 9 days but there are side effects that we're now dealing with. Here is a list of what medications she's been on:

Phenobarbitol- The first medication that actually showed any promise. A barbiturate used originally as  a sedative that has anti-convulsive properties. In the low doses she's prescribed there are No side effects but the seizures aren't under much control. The higher "loaded" doses of 400mg or higher can knock her out for days. After a time, her body seemed to burn through the regular and loaded doses far too quickly which caused the most recent rash of seizures that landed her in the hospital.

Topamax - This anti-convulsive drug was originally added to her Phenobarbitol to stop her seizures. However in the first couple of days it appeared to make the seizures worse to which after one specific dosage her seizures occurred ever 45 seconds. In the end, they ended up combining a third drug to manage her seizure activity. Since this drug was prescribed to her, the adverse side effects are slurred speech and  loss of appetite, which ironically is the reason the FDA later approved this drug as a weight loss drug. Her appetite went from wanting food constantly to having to sit by her to make sure she eats something at all. Michelle is currently 5 feet 7 inches (170cm) and weighs 126 lbs. (57.3 kg.)

 Dilantin - This anti-convulsive drug has been the only drug that has worked on her every single time it was administered and was finally added to her daily regiment the day before she was released from the hospital. It is the only drug I know that works well to control her seizures but has the worst side effects out of all the medicines she's currently on. With this drug she exhibits bizarre mood swings of laughter and crying without warning. She also has  fits of hyperactivity where she is all over the place and speaks at a high volume to the point that she loses her voice. These side effects are the most annoying to deal with.

Lorazepam - This drug is used primarily as an anti anxiety drug that has been known to stop seizures. It was administered during her first Emergency Room visit to stop her seizures and later added to her daily regiment by her primary care physician. It only worked once and after the second ER visit it was taken off of her regiment. She was not on this medication long enough to see any side effects.

        I often wonder if the side effects are worth stopping the seizure and every time I say yes. There are obvious concerns and changes to our daily lives because of them but none are worse than watching her seize up over and over again and wondering if their going to get worse each time. Nothing is perfect with this and nothing will cure her of these disorders but now I am managing each action as the lesser of evils.

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.