Interview With My Father, Andy Nathan:
One of the most challenging aspects of having a kid with KLS is receiving a proper diagnosis. Andy, my father, recalled the struggles of determining what was “wrong” with me. Since KLS presents itself so strangely, is so rare, and so unknown in the medical world, many patients, including myself, are misdiagnosed many times and for such long times. My dad reflected how I was diagnosed and the irony in it. No specialist, whether a medical doctor or alternative medicine specialist were able to diagnosis me; in fact, it was at a dinner with friends when my parents were dining with a sleep specialist when he mentioned that my symptoms reminded him of a sleep disorder that he read about but couldn’t remember the name. The next day, my parents got an email from him in which he suggested my parents research Kleine Levin Syndrome. After doing research, my parents were certain I had KLS and brought me to a pediatric neurologist for affirmation.
When talking about the difference between life when I am in an episode and when I am not, my dad said there is definitely a difference. “When your child is in a KLS episode life is pretty much turned upside down. While I did go to work each day, having the benefit of a wife who could stay at home with him, the reality is your mind is never really clear. I usually got work done as fast as I could and came home. Even with a full understanding of the disorder, recognizing that it is not life threatening and that each episode will ultimately end, and even knowing that your child will ultimately outgrow it, the fear for your child, the unknown in terms of the duration of an episode will last or how long breaks between episodes will be, still controls your life from day to day. There is an old saying that a parent is only as happy as his least happy or least healthy child. With KLS though the challenge for a parent goes beyond wishing your child were better, it relates to the fact that in an episode your child even when awake is not really there. He doesn't look like himself, talk like himself, or act like himself. It's sort of like living with a zombie, non-communicative and non emotional or reactive. Seeing your child in that condition is unbelievably painful. You also as a parent have to deal with the recognition that as each day goes by your child has lost yet another day of social involvement, is falling farther behind in school, missing sports team participation and is generally disconnected from all activities of normal life. So you not only worry about how they are, but also how they will be when they get better and have to go through the process of catching up. Also, the end of episodes, the last few days when your child is awake more but still not mentally or emotionally connecting, is perhaps the most painful. The good news is you know when that state is reached that your child is starting to get better. But at the same time because your child is sleeping less and physically awake more you are forced to confront the most awkward time of the disorder when your child is there but not really there at all.” That being said, the good news is when I am awake, and thus the same with other kids, for the most part it is back to normal as if the disorder doesn’t exist. However, even though the disorder is completely dormant, everyday life is not completely “normal”. “When your child is not in an episode, life is still not quite normal with KLS. First as a parent you witness your child having to do double the work. They must do normal school work and catch up on old school work. In sports he constantly needs to catch up to his normal high level of skill. At the same time you're trying to encourage him to re connect socially with friends and whatever other personal interests he has, even though his time is compacted because he have so much catching up to do. You also worry deeply about their ability to avoid depression, given how disrupted life is and how stressful the impact of KLS is. A parent also has to balance concern for the child’s well-being in effort to avoid future episodes with the desire to let your teenager be a normal teenager. So we worry about things like curfews and over exerting themselves and all the other normal concerns that all parents have, but which are simply compounded with a child who has KLS. At the same time you want your child to have a completely normal life in all respects between episodes. We have read about some parents who treat their children with KLS as if the kids have some constant illness and disease. Holly and I took a different, and we think healthier, approach. In Tyler’s case our perspective was Tyler is a normal, athletic, socially engaged kid who happened to have a rare and episodic disorder that took him out of play for periods of time. We think that was very, very important. We tried our best not to put any atypical restrictions on what he did, where he was or where he went, and we understood that if an episode resulted we would simply have to deal with it. That continued right through to the decision for Tyler apply to and go to Emory University 1000 miles from our home. The notion of stopping or discouraging him from following his dream, whether it was to play varsity and AAU sports, to work overtime to graduate on time, or to go out of state to school never crossed our mind.” The approach to parenting that my parents embraced is an approach I really appreciate and one that I encourage all parents who have kids with KLS follow. It is important to understand the consequences, both good and bad, you, the parents make, and those of the child when making decisions. To treat your child in an atypical fashion is unjust and unnecessary. In conclusion, the role parents’ play when it comes to having a child with KLS is definitely more significant, but parents should also always put themselves in their kid’s shoes and think how they feel. |