Communicating with the Doctor: When Your Child is Non Verbal.
Has this ever happened to you? You go to the doctor with your little one and describe a scene of horror: “Her acid reflux was just awful last night. The worst it has been in a long time. She was awake all night screaming. I could barely hold her as she was arching her back between bouts of vomiting. Then she held her breath and I thought she was going to pass out.” The doctor is starring in disbelief because you are describing the little girl sitting on the examining table smiling broadly with a twinkle in her eye. You know the doctor is thinking, “Reeally?!” or, “She is really dramatic.” or, “I am sure she is exaggerating a bit.” Now what? After raising three girls and going to the pediatricians office more times than I can count, I know that this is a typical scene that happens over and over again. They never act sick in front of the doctor. As bad as the night was, they always feel much better the moment the van pulls up to the doctor’s office parking lot.
The reality is little ones get sick very quickly. One moment they are playing with their toys and the next moment, blood is gushing from an open wound or an ear infection came from nowhere with the force and speed of a tornado. Luckily you are the mom or dad and have a sense that something is wrong well before anyone else. You just feel that she is sick or hurt. She just doesn’t “look right” or “sound right” or you hear a change in her cry or her voice. She might not eat her favorite pureed fruit or reach for her favorite toy. You just know.
The challenge is describing this in full sentences to the doctor during your five minutes of face time during the typical sick visit. Whether your child is a newborn infant or an older child with communication challenges from a speech delay or autism, you are the voice of your child.
I have found that the key to getting the best medical care is clearly communicating the concerns and the symptoms. Data is very important too. If I go to the doctor and say, “My baby cries all time.” The doctor is likely to think I am talking about typical crying. Yes, babies cry, some cry a lot some cry a little. Crying is normal. The doctor isn’t going to be very concerned and may even make a comment that hurts like, “You just have to get used to this and deal with it.” However, if I conduct a small research study on my child and present data, I might have a different conversation with the doctor. If I kept a small notebook by my side all day and recorded the crying for 24 hours, I could say to the doctor, “In the past 24 hours, she cried for __ hours. She was inconsolable for __ periods and I could not calm her down for ___ minutes each time.” This type of information would likely trigger a different response from the doctor. It is immediately clear that this is not typical crying and the doctor would probably ask different questions and maybe offer strategies and treatment to help figure out why she is crying so much. This has worked for me over and over again. I have tried to teach this strategy to many other parents and have received a great deal of positive feedback that it works.
Yet, sometimes it isn’t enough. In some cases parents tell me more data is needed and there is a follow up doctor’s appointment or two before the doctor really understand the problem you are seeing at home. Part of the problem is most babies and children have a worsening of their symptoms at night when the doctor’s office is closed or during mealtime. That is when more extreme measures are needed. Some parents have taken a short video clip of their child’s symptoms to illustrate the problem much more graphically than data and charts. With so many compact phones and recording devices, this is easier than ever. Another desperate measure is to bring the baby to the doctor when she is inconsolable or not eating. Ask the doctor or nurse to try feeding or comforting her. Again, parents have told me this has worked quite effectively for them.
Always remember that you are an expert on your child. You know your child best and can see small changes that may indicate an illness or injury. Since you child can only communicate by crying, refusing to eat or staying up all night, you are her voice. You are in the best position to report and interpret her symptoms and advocate for the best care.