I can't believe it has been almost nine months since I have last posted. It has been a very busy year. Along with going through a divorce I was dealing with a very difficult child. I have not said much about her situation and told only a small handful of people the struggle we have been going through. It all started about 3 years ago... Avrie is our youngest she came home from Haiti and had a house full of people to love her and pay attention to her, and she was the light of our life. She was funny, sassy, full of personality and very smart. She had three teenage sisters doting on her all the time. She had a dad that would make her breakfast and walk her to school and then walk her home. She had a stay at home mom that volunteered at school, arranged play dates, drove her to her various activities and they liked to bake together. Then the 3 teenagers grew up and left home, her dad started working away from home, a lot and soon he was too busy to walk her to school or be there when she came home. Her stay at home mom went back to school and work and soon she felt abandoned. This all triggered her early childhood trauma and she developed narcolepsy. We didn't know what had happened we just knew that our once fun-loving little girl was now a very angry depressed preteen, it was more than just hormones but we could not figure out how to "fix" it.
She was losing all of her friends, her family didn't know quite what to do with her or how to handle her behavior and I was her safe person which means I got the brunt of her anger and frustration on a daily basis.
She started seeing a counselor and this helped a little but not really. The explosive anger, sadness and depression were not really getting any better. I now had a child that was so sad, wouldn't communicate and couldn't express her feelings. She was sleeping more than she was awake and she had some very odd behavior. I took her to the doctor and they diagnosed her with depression and put her on medication and referred me to the clinic's social worker. We met with the social worker who referred me to a therapist that specialized in attachment disorders in children that have been adopted.
Then last May she had a pretty big meltdown and I begged a friend to take her for the weekend while I went to go visit Katie, she was refusing to go to Katie's and my friend agreed, on very short notice, to have her over for the weekend. After that weekend my friend suggested that I look into narcolepsy. I did some research, made another appointment with her doctor and she referred us to Seattle Children's Hospital. It took 6 months to get into the sleep study department for our initial appointment. In November we met with them and at first they just wanted to do the sleep study to rule out a sleep disorder, I begged for them to add on the nap study which was required to get the narcolepsy diagnosis. They agreed and they also did a blood test to see if there was a genetic marker for narcolepsy, which she tested positive for. We then scheduled the sleep study for the end of February.
After several sessions with the attachment therapist -August through October- she recommended us to the psychiatric clinic at Seattle Children's Hospital we got in pretty quick with an appointment at the end of December. They confirmed that there was more to Avrie's behavior then mere depression and attachment issues and we agreed to wait until after the sleep study to go forward. They would now be working closely with they sleep study department and coming up with a treatment plan that addressed all of Avrie's medical needs. I was finally starting to see the light at the end of a dark tunnel, it is excruciating watching a child you love dearly slip into a deep dark hole.
We arrived at the sleep study on a Sunday evening. They hooked Avrie up to all the monitors and she quickly fell asleep. They measured her brain activity to see what kind of sleep she was getting. I had to stay at the hospital with her, they gave me my own little room. The plan was if they found that she had a sleep disorder they would cancel the nap study. The next morning they went forward with the nap study. She was instructed to take a nap every 2 hours for 15-20 minutes. After 4 naps they let us go home and we had a follow up appointment 2 weeks later. At the follow-up they said that Avrie had severe type 1 narcolepsy with catalepsy which means that along with falling asleep her body also looks like she is having a seizure, he legs go week and her eyes start rolling back and her speech is slurred, this usually happens when she shows emotion. (I asked Avrie how she avoided this while at school and she said that she would never laugh because that is when it happens the most.) They said that during the sleep study she woke up 22 times during the night but Avrie didn't recall waking up. During the nap study the guidepost for possibly having narcolepsy is if the person can fall asleep within 8 minutes of the 15-20 minute nap. Avrie fell asleep within 30 seconds all but one time and that one time it took 55 seconds. She also went into a deep REM sleep right away. They asked me how she was even able to function. I described Avrie's typical school day. We get up at 6:00 am and leave for school at 6:45 she sleeps for the 30 minutes it takes to get to town, I wake her up and give her medication, which included a green tea pill for energy. She would fall back asleep in the car and wake up about an hour later and go to school. She would try her hardest to stay awake at school, if she felt tired she would get up and go talk to friends or walk around the room, often getting into trouble for leaving her seat. Avrie didn't want her teachers or her friends to ever find out what she was dealing with. At lunch she would take another green tea pill to make it through the afternoon. After school she would walk the 3 blocks to my office and immediately fall asleep once she got there. She would sleep until it was time to go home, she would make it to the car then sleep all the way home. She would go straight to her room and sleep again until dinner was ready. She would wake up to eat and stay awake for about an hour or so, then she would be back in her room sleeping. She would often wake up in the middle of the night with nightmares. They also asked about Avrie's grades, usually poor grades follow along with narcolepsy. Clearly Avrie isn't doing homework, but somehow she managed at school to get most of her assignments done and turned in, again a huge effort on her part to look normal. The amount of effort Avrie had to put in to "look normal" was very draining and she would come home completely tired and grumpy.
They started Avrie on the medication and worked with the psychiatric clinic, almost within days I started seeing a different child. She is awake more, she would actually have a conversation with me, and she was enjoying playing the piano and art. We are still in the process of dialing in her medication, and we can now work on "normal teenage behavior" in the home. It felt like a huge weight was lifted off my shoulders and with proper medication she should be able to lead a pretty normal life.
I am so glad I just didn't write this off as her being a horrible teenager, I knew there was something more going on. I am glad I had the health insurance and to be in a position to pursue medical help for her. I am grateful for a friend that would take on Avrie, she even watched her most of the time I was in Haiti last summer, and do some research to help me get to the bottom of her issues. We still have some work to do but to see a smile on her face and to see her engaging in our family is huge. It could not have come any more timely with the stay at home order I don't think we could have done it without the diagnosis and medication. We have been home all together for 2 weeks now and so far so good.
Avrie doesn't want anyone to know what she is going through but I told her if she had cancer or a broken arm it wouldn't be any different, she has a medical condition, we are treating it and it is going to be ok. But if you are reading this and personally know Avrie please just treat her normal and don't mention anything about it except maybe you are noticing her beautiful smile and a new light in her eyes.
