Entry Fifty Nine- Feeling Acknowledged

I am not sure if I shared that Oscar was discharged from neurology at The Hospital for Sick Children and referred to a community pediatric neurologist. Although it was (is) tough leaving the security blanket of the Children’s Hospital, it is great news that Oscar is currently not as “worrisome” to neurology as he once was.

I wanted to share my experience at our initial visit to the outpatient pediatric neurologist…

The office is about an hour and a half from our home. No big deal, we are used to commuting for medical appointments. We had driven about 45mins when we received a call from the office that the neurologist had been taken to the emergency room herself and that we will be re-scheduled once they learn more. Of course my reaction was nothing but concern for the doctor and we returned home.

We waited to be re-scheduled…

I received a call on a Wednesday that the appointment had been rescheduled for the following day at 11:15am. I mentioned that we had a previously scheduled audiology appointment at 9:00am in a different city and asked if it was possible to move the appointment to a later time? No, that was the only option… so okay, we took it.

Our audiologist was great and worked quickly through our appointment so that we could make our neurology appointment on time.

We arrived to the appointment early and as instructed we waited outside the clinic until 1 minute prior to our appointment time before entering the building. We took the elevator up to the 4th floor and as I was about to enter the office I noticed a large “No Stroller” sign stuck to the door. This wasn’t the first time I had seen a sign prohibiting strollers. But this particular sign caught me off guard… isn’t this a pediatric neurology clinic?? Wouldn’t there be many children attending this clinic who have delayed gross motor skills or who are non-ambulatory?? No strollers??

We waited 45minutes in the waiting room before the neurologist came to get us. Honestly this was not a big deal, we are used to waiting. But, they knew that we had rushed from another appointment in a different city, it would have been nice for them to let us know that coming a bit later would have been okay.

Every epilepsy parent knows how specific medication dosing is to body weight, so I was surprised that she had a mechanical beam scale versus a digital scale to take Oscar’s weight. Oscar doesn’t stand independently, so she instructed me to weigh myself and then weigh myself carrying Oscar and she took the difference as Oscar’s body weight. It didn’t seem to be the most accurate method…

He was weighed 4 days later on a proper scale by his pediatrician and was 1.2kg heavier!! Our pediatrician re-dosed (or properly dosed) his medication.

As she was doing her exam she commented on his ‘heart murmur”. We do know that Oscar has a small VSD (Ventricular Septal Defect) that was not concerning, and we do follow up with cardiology annually. It almost felt as though she said it just to say it.

Funny enough, 4 days later our pediatrician didn’t hear the VSD and reported that it must have closed. Our pediatrician has been with Oscar since he was 7 1/2 weeks old. There is a substantial amount of trust there. So I am not sure if she actually heard a murmur or if she just read “VSD” in his history and wanted to comment on it?

She also commented on his “scoliosis”. As a physiotherapist, it surprised me that she made this comment while Oscar was sitting asymmetrically with one knee bent in (this should be assessed in standing and then with forward bending). But as a mom, of course I was concerned. She is a neurologist after all… She should know better than me.

We had a 1 1/2 hour drive home so I went to use the washroom which was in the main hallway of the office building. The washroom was smaller than my powder room. The stroller wouldn’t fit (yes, I brought my stroller anyways despite the sign). And of course a wheelchair wouldn’t fit…. How could a neurologist choose this office space knowing that many of her patients would be non-ambulatory and would be reliant on a stroller, wheelchair or some other assistive device? Of course I wasn’t going to leave Oscar unattended in the hallway of the building. So I didn’t use the washroom.

I was so upset leaving this appointment.

This is a doctor who specializes in treating children with neurological conditions. How could she not consider her patients when selecting her office space? How could she not accommodate them? I was sympathetic and accommodated her and her medical needs… How come she couldn’t do that for my son?

This situation really upset me because this place, of all places should “understand” my son and other children like him and yet there were no accommodations. If this place won’t accommodate my son…. What about the rest of the community? … The rest of society? It opened my eyes to a much bigger issue. And it felt like such a big slap in the face.

It came down to acknowledgement. Acknowledge my son. Acknowledge his needs. Acknowledge the complexity of his medical diagnosis. Acknowledge how this impacts not only my son, but his family too. And she didn’t. The one person who is supposed to “take care of him” didn’t consider him.

My son deserves better than what she was willing to offer. I won’t take him back there.