Why Pediatricians Need to Listen to Parents

Recently, during a typical day as a developmental pediatrician at the Rose F. Kennedy Children’s Evaluation and Rehabilitation Center at Montefiore, I walked down the hall to schedule an ophthalmology appointment for a toddler. As I spoke with the secretary, I saw a thin “new patient” chart on her desk for another patient. I recognized the name at once and was immediately transported back 25 years ago, to when I was a fellow in training at the center and learned a very important lesson.

In 1990, I saw a two-and-a-half-year-old girl who had cerebral palsy, accompanied by her mother. She had the characteristic difficulties of a hemiparesis, with her right arm postured by her side and her right leg dragging behind as she walked. This was not what brought her to the center, however. The girl was becoming more behaviorally difficult, her mother said. She was more active, not listening, and not using her words, instead throwing frequent and severe temper tantrums.

I heard the story and carried out an assessment. She had the classic physical findings of cerebral palsy hemiparesis, but I recall agreeing with the mother that the little girl’s behavior was a source of concern and confusion. Many children with hemiparesis without a clear etiology have normal cognition. I could not get this little girl’s attention. She was a whirling dervish of activity. She did not follow any of my commands or engage with any of the assessment materials that I offered. I heard her vocalizing and laughing but could not make out any words.

I sought more information about the girl’s language skills. Her mother reported that she had acquired a vocabulary of 20 or so words, using them for favorite foods and toys. That had stopped recently. It was a confusing story, because it seemed unlikely to me based on what I witnessed that the child had that capability with language.

As a fellow, I presented the children I saw to an attending physician who oversaw my clinical work and offered guidance. I remember describing the conundrum to the attending—whom I respected greatly—and she commented that the child was 2 years old and clearly very delayed in her development. Many of the concerns the parent was raising about overactivity and tantrums were to be expected from such a child, she said.

On the reported decrease in language usage, the attending suggested that parents are often overly positive about their young children’s vocalizations, “hearing” words amid the babble. We set up a plan with the parent to carry out some additional evaluation, including audiologic testing and speech, language and psychological evaluations.

As part of my training, I was assigned to be the pediatrician at a local special preschool. When I went to the school the following week, the nurse mentioned that the little girl was a student at the school and that they had referred her due to their observations over the previous six months of loss of language and increased behavioral difficulties. From the child’s teacher and her physical and occupational therapists, I learned that the girl had once been able to greet them, ask for food and toys and sing songs when she arrived, but now seemed unable to do any of these things.

I went back to the center with this additional information. More discussion with the attending underscored that such developmental regression is never normal in a young child. It was recommended that I consult the pediatric neurologist. Based on that discussion, the girl was admitted for an overnight prolonged electroencephalograph study looking for evidence of seizure activity—which was found in the damaged left side of her brain in the area that controls language.

The condition of seizure activity without the typical physical manifestations associated with language loss had a name that I had never heard before: Landau Kleffner syndrome. The child was treated with a series of medications with the goal of controlling the seizures and, it was hoped, leading to the reemergence of language.

I followed the girl for several more years before she left my care. Unfortunately, she did not have a significant improvement in skills. In those days, language regression was also recognized as occurring in a significant portion of children with autism. The importance of eliciting a history of language regression and listening to parents was emphasized as part of the care and management of children with possible autism … as with all young children.

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I walked back to my office, looking from one side of the hall to the other. Then I saw her. Even 25 years later, she was readily recognizable to me. The woman was accompanied by an attendant from a group home for her first appointment at the center (as far as the secretary or the attendant knew) to see the eye doctor. I asked if she was able to speak. No, said the attendant; she had never heard any words from her. I watched her walk with her hemiparetic gait into the examination room.

Here’s the key lesson that I learned, which applies to all pediatricians: Listen to parents. It is a basic tenet of being a pediatrician. Little children and those with significant developmental delays cannot speak for themselves. They cannot report what ails them. We must rely on those who know them well to offer their observations and interpretations of their children’s behavior. In this case, it wasn’t enough that the parent reported that the child was talking less. We doubted that report until it was confirmed by the teacher, the therapists and the school nurse.

This little girl’s story had taught me an essential lesson that I will never forget.