When Diagnoses Differ

My former micro-preemie twins get regular occupational therapy, physical therapy and an early childhood educator courtesy of the state’s early intervention program.

But, even with the therapy, M is far behind developmentally, and exhibits a host of behaviors that his brother does not: licking things, staring at lights, rocking, hitting his head against the wall, etc.

At their last doctor’s appointment, M’s results on the M-CHAT survey flagged him at a high risk for an Autism Spectrum Disorder (ASD). Further tests brought a Sensory Processing Disorder (SPD) diagnosis instead. But, because there may be an ASD diagnosis down the road, the pediatrician gave orders for more intensive occupational therapy to help with both.

While not a welcome diagnosis, It wasn’t shocking. From the moment my pregnancy went south, the medical team was honest about the likelihood that my babies would not survive or would have lifelong medical problems. Further, both have already shown sensory processing issues. I am very fortunate that things are not worse than SPD.

But, the early intervention team did not share my confidence in the doctor’s diagnosis. The educator did a follow up M-CHAT using her own observations, and her test said M showed no warning flags for ASD.

Perhaps this is because therapy occurs in our calm home, or perhaps it’s because he’s a curious and likable child, who responds well to therapy, so I suspect it becomes hard to imagine something difficult is emerging.

For whatever reason, she got the opposite outcome from the doctor, and now we had the pediatrician on one side of a diagnosis, and the team of therapists on the other.

I lean toward the doctor’s diagnosis for a few reasons. First, it explains the unusual things I’ve seen him do, and aligns better with my gut, which tells me something is off.

Second, it’s the safest bet. If we get him therapy now, and the doctor turns out wrong, then the worst that has happened is that money was wasted. But, if we skip the therapy but the early intervention team is wrong, then he will have missed out on important help when his brain is the most capable of change and growth.

When I look at my reasoning in siding with the doctor, I worry that it’s a bit too similar to the reasons people have for using quack medicine in the face of a confusing diagnosis.

I think quack cures are pervasive because they explain what parents like me (who have no medical education) see in their child but do not understand. They take advantage of our ability to draw connections between unrelated things (vaccines given around the time autism appears? It MUST be the  vaccine). How much different is that from wanting to believe the medical professional because her response agrees with my gut feeling?

Then there is the safe bet problem. Pseudoscience often relies on “better safe than sorry” logic (avoid GMOs because they might be dangerous). Here I was using the same logic to chart a course of treatment for my son.

When does planning ahead and trusting your judgment start to veer into an acceptance of quack cures and fear of science? I am not doing that here, but is it ok to make the right choice for the wrong reasons? How do non-scientist parents ensure that they make informed, intelligent choices for their children’s care?

When I find myself stuck in a cycle of doubt, I read reliable sources and talk to people who are educated in the issue that concerns me. I found fascinating articles on SPD and ASD on science-based medicine websites and in the NIH’s online library.

But that just addresses my personal handling of the conflict. On a wider scope, the different diagnoses have implications for treatment and my role in the process.

According to state guidelines, the early intervention provider trumps the doctor: So, the physician’s diagnosis carries no weight if the early intervention team wants to ignore it. Fortunately, the state also has a plan in place for mediating disputes such as this, and the first step is a meeting.

I met with the boys early intervention care coordinator, and we discussed the diagnosis for M; I answered questions about his behavior outside of therapy, and requested a change in treatment plan.

Whether they agreed with the doctor’s diagnosis or not, adding OT sessions made sense to treat the sensory seeking symptoms of rocking, licking and banging his head. So, in the end, his treatment will reflect what the pediatrician wants, and we’ll see where his diagnosis will be as he matures.

But what about when things don’t end as amicably? Here in Connecticut, ask any parent of a special needs child about the Justina Pelletier case, and watch us shudder. Ms. Pelletier, a Connecticut teen, was diagnosed with a rare condition and received treatment at Tuft’s Medical Center until she followed one of her specialists to Boston Children’s hospital, where the team disagreed with Tuft’s diagnosis and had her removed from her parents’ custody due to medical neglect. A year and a half later, Justina finally returned home.

It seems to me that it’s easy to see who’s in the wrong when parents side with quackery in treating their children instead of established science, but in Justina’s case (and to a much lesser degree ours and families like us around the world) the difference is between trained established medical professionals. It’s a scary thought that differing diagnoses can mean losing your child, even temporarily.

When I consider how helpless Justina Pelletier’s parents must have felt, I find myself appreciative of the sense of agency I have over my children’s medical care in getting to help determine its course. I feel useful, as if my decisions help make a difference, my concerns are heard, despite the fact that all I’ve really “decided” to do is what our doctor told me to do, and that decision can be overridden by our early intervention team at any point.

I wonder if this empowering feeling is part of what draws parents to seek and utilize unproven techniques and unorthodox diagnoses. When the medical community has given a lay-person parent a frustrating diagnosis, a quack diagnosis that dismisses the first feels like a safe harbor. One that promises a cure where real science has found none is especially attractive.

The early childhood educator who did not see flags for autism in my son operated partially out of wishful thinking. If a professional can do this, imagine how easy it is for a parent to do so, and get sucked into a friendlier or more empowering diagnosis or treatment plan than medical science can offer.