Visiting The World Of What Could Have Been

Cordy had her annual check-up with her pediatrician two days ago, and this time it was with the ped that saw her during her entire first year of life. OK, she’s actually a pediatric nurse practitioner, but typing that out every single time will cramp my fingers, so let’s just call her the ped, OK? This particular ped left the practice due to family issues when Cordy was a little over a year old, and just recently came back to work again. I was thrilled to see she was back, so I made sure to schedule Cordy with her.

(I’ll also add how thankful I am that we have a great pediatric group. They’re not covered by the state insurance that the girls now have, but the office worked out a reduced cost visits deal with us so we wouldn’t have to change peds until we have better insurance again.)

Cordy always has a problem with the doctor’s office. But she has matured a little, so I hoped it wouldn’t be as bad this year. When we were called back, things started off very well – she actually took off her shoes and stepped on the scale to get height/weight measurements with only a little prodding. We once again confirmed that she is maintaining her Amazon status: 43 inches tall, 45 pounds. She’s only 5 inches away from riding most adult roller coasters and sitting in the front seat of a car – and she just turned 4!

But when the nurse led us into the tiny examining room, Cordy’s discomfort with the situation began to get to her. The nurse tried to take her blood pressure, but only got as far as wrapping the cuff around her arm before Cordy started to squirm and beg to take it off. The nurse tried to calm her down, but she only got more upset. At this point, the nurse turned to me and asked rather sharply, “Is there some behavioral issue or condition I should know about?”

I was a little taken aback by the wording, and stuttered out, “Well, yeah…uh…she has autism,” and then quickly added, “but is high-functioning and has made a lot of progress.” Like I needed to justify it or something.

The nurse stepped back and took off the blood pressure cuff. “Ah, well, then I won’t bother with this. Did they take her blood pressure last year?”

“Well, no. They were kind of afraid of her at her appointment last year. But you can see she’s doing much better now.”

The nurse nodded, asked a few more questions and then left. Cordy started to get manic in response to the situation, climbing on the exam table, spinning around to rip the paper, and standing up on the table. The minutes it took for the ped to come in felt like days.

It was great to see this ped again. She is gentle spoken and approaches children slowly with an air of friendliness. I absolutely love how she interacts with children. Cordy didn’t appear threatened as she looked at the ped and said, “Hi doctor, I have a boo-boo on my leg. Can you fix it?” (She has a scratch on her leg.)

As the ped looked through Cordy’s records, she asked us questions about Cordy’s autism, when and where we had evaluations done, and what therapy she currently receives. She paused when she got to Cordy’s growth charts, looking carefully at the head circumference chart and flipping back through various doctors’ notes at the same time.

“Were you aware of how big her head was when she was two?” she asked us. “I mean, her head size was already off the charts at 15 and 18 months, but look here.” She showed us the growth chart, which I already knew by heart. “At two years old, her head size makes a dramatic jump, way off the charts. Did the doctor bring it up at that visit?”

“No.” I replied. The truth is, after this ped left, we saw several different doctors and nurse practitioners after her. It seems like every time I tried to schedule a new appointment for Cordy, I was told that her previous doctor was no longer there, so I’d have to see a new one. I didn’t like the lack of a consistent pediatrician, but most of them seemed nice enough.

“And she wasn’t evaulated until she was nearly three?”

“That’s right. I decided to have her evaluated after Aaron and I became concerned with her behavior.”

She shook her head. “They really dropped the ball on this. If I had seen her head size at two years old, I would have immediately looked into screening for autism and ordered a CT scan to make sure everything was OK. A head circumference that large at that age is always seen as a concern. There is a correlation between larger heads and higher intelligence, but children with autism tend to have larger head sizes – and many have high IQs – and it can be an early indicator that can lead to earlier diagnosis and treatment.”

This bit of news only confirmed what I already knew. I remember Cordy’s well-checks when she was younger, and I remember watching her head circumference continue rising further and further away from that 100th percentile line. I was concerned, and I expressed my concerns, but I was waved off with a laugh and a “big head equals big brains, right?” from the peds at that time. No one seemed concerned, and so I continued to believe that her behavior was a result of inheriting her parents’ stubborn and strong-willed natures. Hindsight is 20/20, of course, but I wish one of her doctors would have noticed or said something.

Cordy resisted for much of the physical exam, as expected. We measured her head circumference again, just to see how much it had changed from her two year measurement. They don’t have growth charts that track head size past three years old, but her measurement was very close to her two year measurement. The ped told us that since it’s been two years without much of a change in circumference, and since Cordy has shown progress at school in her behavior, she wouldn’t recommend a CT scan now. But she added that she’s really disappointed that no one else paid attention to the signs earlier.

I’m thankful that Cordy is a healthy child who rarely gets sick. And Mira is much the same way. They both have the occasional cold or stomach bug, but it doesn’t slow them down much. And I’m glad to have Cordy’s old ped back, and I think Mira will start seeing her too. I couldn’t help but notice at Mira’s 15 month well-check that her head circumference has gone up and is now hovering just under the 100th percentile mark, taunting us with the possibility of jumping over that line at the next visit.

I don’t see any signs of autism in Mira, though, and I hope none will develop. However, she is being evaluated in two weeks for a possible speech delay – at nearly 17 months, she still can’t fully say a single word. She tries hard, but words come out as a strange warped version of what she’s trying to say. The musicality of a word is there, but few of the sounds come close to matching. I probably wouldn’t be concerned if it wasn’t for the fact that I remember Cordy talking up a storm and starting to count at this age. I brought up the issue at her last well-check and her ped recommended an evaluation after hearing my worries.

I guess the lesson from all of this is that even pediatricians are fallible. The best advocate for your child is yourself – you know your child better than anyone else. Ask lots of questions, and don’t be afraid to push an issue. If I had pushed the issue two years ago, it’s possible Cordy could have started therapy sooner and be at a higher level of progress than she currently is.