Smiling Through the Pain
No one likes to go to the emergency room with their little one. Unfortunately, having a child with a laundry list of diagnoses stemming from one chromosome being deleted, the emergency room is just a fact of life for us. What makes the emergency room even more frustrating, is what I like to call the look.
Our visits start off the usual way. Nicole and I walk up to the emergency room desk and explain that we’re there for our daughter to be seen. It seems like a normal check in process, but I always follow the receptionist’s eyes. While we give Maddie’s date of birth, insurance information, address, and the basic demographic questions, the receptionist is always watching Maddie. This is probably because she is the patient in question but what the receptionist sees is Maddie smiling. The receptionist sees Maddie playing it up for the room, to the lay person, Maddie doesn’t seem sick at all.
This is when we get the look. It’s almost like the receptionist is eyeing us up, wondering if we’re just nervous parents. At times, I wonder if the receptionist thinks we have Munchhausen Syndrome by Proxy. So when the receptionist asks what Maddie is there to be seen for, we always start off with, “Well our daughter has Angelman Syndrome….”
This is how we start off most of Maddie’s medical conversations if it’s a new office or a new provider. It’s just a fact of life. We have to lay out why Maddie is acting the way she is, therefore she doesn’t get pigeon holed by just her clinical presentation. Our daughter for the most part, smiles through the pain. This was plainly obvious during our last ER visit. Maddie actually had an impacted bowel, but to the casual observer she probably seemed pretty darn happy.
Starting off the conversation with my daughter has Angelman Syndrome does work for us. It seems to lower the provider’s skepticism. We have to be the voice for our daughter, simply because our daughter does not have a voice. At the moment, Maddie cannot tell us what’s wrong. We have to study Maddie’s behaviors and make an educated guess as to if something is wrong.
Our latest visit to the ER, was because Maddie’s behaviors changed a week prior. Finally, we relented and called her PCP. It was upon consulting with her PCP that prompted us to go to the emergency room. This is another tool in our toolbox as well. Emergency rooms across the country have what are deemed frequent fliers. These are people who go to the ER for every problem. Having the phrase in our back pocket, “Her PCP told us to come in,” also helps the emergency department to categorize Maddie’s visit as somewhat serious.
As with any visit, Maddie’s room turns into what is seemingly a training exercise. Usually we’ll see multiple providers and multiple nurses. There’s not many Angelman children that step through the emergency room doors. Our visits are a view into a rare syndrome that many read in text books but haven’t come across in a clinical setting.
I would love for the day to come where I wasn’t at work and had to drop everything to whisk my daughter away. I would also love for the day to know exactly how my daughter is feeling. When Maddie is sick, I wish she could tell me. There’s multiple anecdotal stories that I’ve heard from other parents where their Angelman child suddenly wakes up in agonizing pain. This stems from weeks and months of pain with no outward signs that something is wrong until it literally becomes unbearable.
Ever since Maddie’s latest ER visit, she’s still been off. It didn’t help that the flu came and visited our household. Our days have been filled with Maddie laughing and playing one minute, then in a full blown meltdown the next. It could be something serious, it could be just because she’s a toddler. So we’ll start the process all over again, with a call to her pediatrician. This could be nothing, it could be something. Is Maddie just in her terrible twos, or is she smiling through the pain?
-Written by Adam Birchmeier
