My Childhood of Misdiagnoses
Last updated: May 2022
Since being diagnosed, I have been looking back more and more on my childhood and how I would act. I personally think I have had narcolepsy since I was 2 years old when I had a fall and hit my head.
I did not have the typical sleepiness that someone with narcolepsy usually has, but I had other symptoms that a lot of people I have talked to who also have narcolepsy had as children. As I am not a doctor and everyone with narcolepsy is different, this is how my childhood was.
Sleep deprivation as a child
After I had the fall at age 2, I was never the same. I stopped taking naps and I would always stay up late and wake up early. This was kind of the opposite of the typical symptoms of narcolepsy, but that does not mean it isn’t a symptom.
I remember for the longest time I would have to have my mom sleep with me or stay with me until I fell asleep because I would be scared or worried. I have recently read that all of these I listed so far are symptoms or signs of sleep deprivation, which could mean I was sleep deprived due to having narcolepsy and this is how it presented in me.
Other possible signs of sleep deprivation
As I look back at photos from around age 4 or 5 and from what my family has told me, I stopped smiling in pictures and a lot of the time refused to have my picture taken. I also never wanted to be touched at some times, and at others I did. My mom has recently told me that I also hated wearing tight clothing and tags on clothing drove me crazy.
These all could be symptoms of sensory processing disorder, or they could be signs of sleep deprivation, which could have been because of narcolepsy.
Another thing I remember is that I was very, very defiant growing up and was aggressive. These are symptoms of ODD (oppositional defiant disorder) and what I was diagnosed with at around age 6. These very well could have been symptoms of narcolepsy, because there was something going on with me and I didn’t feel right, but I could never express how I was feeling because I didn’t know what I was feeling!
As I got a little older, around age 9 or 10, I was diagnosed with ADHD (attention deficit hyperactivity disorder). I had a hard time focusing at school and trouble with some subjects including reading and tests. I was put on Ritalin LA for 2 years, and it helped for a while, but then it stopped working.
Taking Ritalin as a child
This one is very interesting to me because a hard time focusing and trouble in school are symptoms of sleepiness, which could have been caused by narcolepsy. Ritalin is a medication that a lot of people, including myself, take to help manage our narcolepsy sleepiness, so it makes total sense as to why it would have worked for me back then.
I was always on the go as a child and hated when plans changed, but these could have been my body’s way of trying to keep me awake all of the time.
Mental health issues
I then got diagnosed with anxiety and depression in high school. Depression can mimic symptoms of narcolepsy because of excessive daytime sleepiness and wanting to sleep all the time.
Anxiety could have been because of the lack of sleep I was getting. My sleepiness also did not start to show until the doctors thought I had both of these.
Non-typical narcolepsy symptoms
My biggest reason for writing this article about my childhood is that not everyone only shows the typical symptoms of narcolepsy. The toll that sleep deprivation itself can take on our bodies shows these symptoms and if that is the case, maybe the sleep deprivation is being caused by narcolepsy or another sleep disorder.
You can ask for a second opinion
As this is just my story and opinion on what I experienced, my point is if you don’t agree with the first diagnosis that a doctor slaps on you or your child, then don’t settle.
Since narcolepsy is so unknown, not a lot of doctors will think of a sleep disorder as the reason behind these types of symptoms. They will go to what they are familiar with, and that is when you may need to educate them or get a second opinion.
Hoping my story will help others
I am not saying everyone with these symptoms has them from a sleep disorder; I just want to put it out there that it could be the reason, and it wouldn’t hurt to rule out a sleep disorder. Children especially don’t know that what they are feeling or experiencing is not normal, and they don’t know how to describe how they feel.
Again, this is just my personal experience, but my goal is that no one ever has to go 20 years of their life with narcolepsy or any other sleep disorder and not know it because they or their children aren’t showing the typical signs of that condition.
Have you experienced misdiagnosis of narcolepsy? What advice would you give to parents or others who are struggling with the diagnosis process?
Did you know you can read advice and stories from other community members in our new Community Hub?