Being proactive when scheduling my daughter’s medical appointments

Holding the phone to my ear, I exhaled slowly before speaking into the receiver. I’d dreaded getting this appointment on our calendar and had been waiting on hold to talk to a hospital scheduler. Some trips to the hospital are harder than others when managing my 12-year-old daughter Amelia’s Friedreich’s ataxia (FA). This one was for a routine scan involving an intravenous line (IV) to administer contrast dye, an experience that did not go well last year.

In 2023, we had arrived at the appointment unprepared. I’d talked Amelia through the MRI process with little concern, as she’d been in an MRI machine before. What we were not prepared for was the IV.

I’ve previously written about how we prepare for appointments, especially those that involve needles. Amelia needs to be well hydrated, and I always generously apply prescription lidocaine, or what we affectionately call “numbing cream,” 30 minutes ahead of time. In this particular situation, though, I hadn’t done either of those things. The resulting experience is still retold by our FA warrior with passion and anger: It took 30 long, painful, and emotional minutes to get her IV inserted.

Recommended Reading

June 17, 2024 Columns by Jean Walsh

Medical trauma never goes away in life with chronic diseases

Recalling trauma

In the 2014 book “The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma,” author Bessel van der Kolk, MD, makes the case that our bodies retain memories of trauma and pain on a cellular level. In the past, this retention helped us react quickly to things that posed a threat, like a bear in the woods or a puma in the jungle. The more stress, pain, and fear a person was exposed to, the faster the body reacted. This may have increased chances of survival in the distant past, van der Kolk writes, but today, this reaction can cause amplified levels of constant tension, pumping hormones into the body that can cause poor health outcomes.

The book caused a huge wave in the social work profession, of which I am a member, as we began to think differently about how to engage with clients who have experienced physical trauma.

Medical experiences that involve pain or a fear of pain for my daughter have my attention — not just because I don’t want her to struggle, but also because I understand how these experiences might have a negative impact on a vulnerable body. I want to be forward-thinking about how to mitigate these experiences, because life with FA is hard enough. However, avoiding scheduling an appointment, which I had done before in this situation, was not a healthy coping mechanism.

So I found myself on that call with the scheduler, arranging an appointment I dreaded. My self-doubt sat like a lump in my throat until my self-compassion kicked in. I was the parent in this situation, not the professional! As I adjusted my mindset, the requests started coming.

I explained to the scheduler how traumatic our last experience had been. I said I wanted a child life specialist to be available, which are medical professionals trained to help children and families cope with hospital experiences. I didn’t know if we’d need them or if Amelia would want them, but I wanted that option to be available and noted in the file.

I also asked for an IV ultrasound team to be at the appointment. This group of professionals uses specialized equipment to help increase the success of IV placement. They were finally called last year after 20 minutes and many tears. This year, we’ll skip the 20 minutes and hopefully the tears.

As the scheduler began wrapping up the call, she asked if there was anything else. Owning my role as the mom, my response was to the point: “I’ve asked only for what I know will be helpful for my daughter. I look forward to having the treatment team engage in all possible ways to make this a more comfortable and less traumatic experience for my 12-year-old.”

If Amelia’s body is keeping score of all the medical traumas she experiences, let’s try to keep the count down.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.