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A journey into the world of pediatric chronic pain - a new normal

To start, I just want to say the my daughter is doing so much better after her six week stay up at Boston Children’s. The program and doctors and her team were wonderful and it is such a night and day difference, now two and a half months after, from where we were when she was accepted.

I had meant to write updates during the process, but the intensity caught me off guard I had no energy for anything other than the essentials. By the end of it all I was burnt out.

We had her first follow-up after leaving the program on Friday and I finally had it in me to sit down and write this update. You can find the first one I wrote here and the second one here.

The Twilight Zone

So my daughter has Complex Regional Pain Syndrome, CRPS, that started with a minor knee injury and then the symptoms spread throughout her four limbs. Specifically the allodynia, extreme pain to normal touch, as well as discoloration, numbness and/or relentless tingling sensations.

I felt like we entered a twilight zone while we were there. It’s such a unique program with only a handful of similar ones in the US. They limit the number of kids to around 10 with a rolling admission. We ended up staying six weeks, which is a little longer than average but pretty typical for the CRPS patients.

Everyday, as a caregiver, you meet with someone from the care team for at least an hour. She had an MD specializing in pediatric pain, a psychologist, a physical therapist, an occupational therapist, a recreation therapist, and a social worker. It was amazing watching them work. Her team of six professionals were wholly focused on her and one/two other kids for the whole stay. Six professionals, eight hours a day, focusing on three or so kids, for weeks at a time. They also stayed in contact with each other the whole time. You could mention anything to one of them, even if it was unrelated to their specialty, and within an hour everyone on the team was aware. There were no bottlenecks of communication and once a day they all sat together and discussed their plan of treatment and observations. So, it was a unified interdisciplinary approach to get my daughter back to daily functioning so that her pain could fade into the background.

On my daughters side she spent the eight hours rotating through, an hour or two with each specialty. There were also times all the kids did group work together. They had a kitchen, a laundry room, a gym, baths and showers, and a classroom. Basically if it’s something a kid might need help remastering, they had it. They would also leave the building and go for walks with a team member so they could get used to different environments.

Emotions

I cried everyday, even ugly cried, especially during the psychology sessions. While we did part of those with my daughter, they also set aside time for just me and my husband, to work through the complicated knot of feelings this has brought about. They really do understand how hard it is to be a parent of a child in constant pain.

Wednesdays were harder still, since they had caregivers meet for a special hour long support group in the break room. We would all tear up talking about how we ended up there and what our kids were going through. We would celebrate if a child was able to fall asleep a little earlier or sleep for a little longer. Such a little thing but also such a big thing when your kid can’t sleep or stay asleep because it hurts to touch bedding.

Caregivers who had been there a bit would give sage advice on how to validate parking and what coffee shop had a good selection. There were caregivers and kids from all over the country, Alaska even while I was there, and they had dropped everything and made their way to Boston when a spot opened for them. One woman told me she came from California with her child with just three days notice, leaving her other children with her husband, and was prepared to stay an undetermined amount of time. These kids come for chronic migraine, chronic stomach pains, CRPS, and now… long covid.

Especially in the beginning I felt like an imposter. Yes my child was in pain… but was it really this bad? A father who was there my first week reassured me. If we were here it was because many professionals along the way all agreed this was the best course of action. Then I thought we’d probably only need to be there a short time… maybe three weeks at most. But, no, a full six weeks. Which looking back, was the right amount of time for my daughter.

Moving Forward

It seems extraordinary to me. I’m so used to quick medical appointments and a “Here, take this drug” approach. But they gave us parents/caregivers yet another hour long session each week diving into the science and research and why they did what they did. Which, in my daughters case was weaning her off even the occasional over-the-counter medication she was taking for pain and drilling in CBT therapy techniques, mindfulness, and education on the mind-body connection. She went in using a cane for support and a few days in, she put it away and never took it back out. When we arrived she had to rest after a flight of stairs, by week three she was walking up and down six (with breaks) as part of her physical therapy.

The second week was the hardest. The new-ness had worn off and the increased demands of physical therapy and occupation therapy had set in. With the increase may daughter was getting dizzy and would walk in crooked lines down the hallway of the hotel, hitting walls and doors. She’d have to sit down abruptly after a short walk. She was snappy, irritated, and in pain. But bit by bit, day by day and even with some setbacks it got better.

One of her personal goals going in was being able to wear shorts and sit in the grass. I’m happy to say she got there. It was hard, hard work on her part. Following the plan her team gave her everyday (with lots of prodding and complaints in the beginning) and giving it her all. At the end we sat down with her team they shared her progress, they track so many different stats, and compared her scores at intake and when she was finished. She improved across the board and in several cases was back to performing the same as her peers without chronic pain.

Back to… Normal?

The real work came when we left the program. We were handed stacks of papers and many individualized plans. Most are still pinned up on my fridge. Plans to keep moving on painful days, plans to handle different moods, plans to tackle school work and plans to keep going with life. They gave us a schedule of activities to sign her up for. She needs an hour of exercise everyday, chores everyday, getting out in the community, a learning activity and finally a recharging activity.

We also still need CBT therapy weekly, breathing practices, and good sleep hygiene. And on top of it all we need to pace it out so that she doesn’t “boom and bust” as they call it. Which is doing so much that the she invites a pain flare and can’t get moving the next day. Which we have yet another plan for. We really had to adjust our whole family routine and life cadence. But all in all I’d say we are better off with these adjustments.

This will probably be my last big update. The whole goal of the program was to get us to a point where everyday life can take over. The more she can use her skills and be involved in life, the easier it will be to put the pain on the backburner. Even if the pain flares up, which it has and will again, she’ll know what it is and how to tackle it. This isn’t something that can be cured. Her central nervous system is hyperactive in a way that translates to pain. But the mind doesn’t have to focus on that. With enough time and practice and a busy fulfilling life it can be an ever quieting murmur in the background.

I was joking with the psychologist on Friday saying one big take away I had was always carry a thermos of ice water around. “Yep!” she laughed “Our million dollar program, for such great wisdom. Take breaks and drink cold water.” Of course it is so, so much more than that and words cannot describe how thankful I am for her team up at Boston Children’s.

CRPS Posts and Updates:

Dispatches from the fleet

What passing ships signaled back

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