The longest four months - a journey into the world of pediatric chronic pain

It was November 2023 when I was at my computer just sending off an email to my daughters dance studio about her participating in the local Christmas Parade. That’s when I got a call from the school nurse. “She hurt her knee standing up from her desk at school, it looks pretty swollen and she’s in quite a bit of pain.” she relayed to me. Little did I know that would be my introduction into the strange and terrifying world of pediatric chronic pain conditions.

The inciting incident.

My daughter is eleven and in sixth grade. When she got home from school she was limping and could barely make it up the stairs. We started the RICE protocol. Rest, ice, compress, and elevate. By the evening she needed a cane and was begging to go to the emergency room. “Something is really wrong” she would say. We had her repeat what happened several times. “You just stood up to get a pencil? Did you jump up? Maybe you hurt it earlier somehow?”. But the answer was always yes, no, and no. We ended up making the hard call not to take her to the ER that night and kept her comfortable the best we could. But the pain would not budge.

We managed to talk our way into our pediatrician seeing her first thing in the morning. Who referred us to an orthopedic saying that it looked like an acute knee injury. We found one who could see us the next day. But I was left wondering how there could be such an injury from simply standing up. At this point she needed crutches to move around and needed to alternate pain medications every three hours to keep on top of it.

The x-rays reveled nothing. The orthopedic suspected Lyme disease due to the prevalence of ticks in our area, the fact we live in the woods, and that it does sometimes present with a swelling of the knee. I finally relaxed a bit. That made sense to me. We just needed a blood test to verify. A few years earlier my son had Lyme that presented with a swollen knee. And while Lyme is not something to take lightly, a long course of antibiotics can usually do the trick. My daughter was not happy with the blood draw but I was feeling relief.

A couple days later, doing anything and everything we could think of to distract her from the unceasing pain that now radiated up and down her whole leg the results finally came back. Negative.

We called the orthopedic who wouldn’t see us for two weeks. We called the pediatrician thinking it must be a false negative. At this point I wanted it to be Lyme because I could wrap my head around that. What else could it be? Severe tissue damage? Nerve damage? Her leg was cold, her foot felt strange to her, and the pain medication was doing little even though we were giving her the max allowed. She begged to go to the emergency room so someone could do something. But I knew they would just refer us to a specialist.

On Friday I had had enough. The orthopedic must have missed something. So we were going to find another one who could see us sooner. I researched potential pediatric orthopedics we could feasibly drive to and my husband made the calls. Eventually someone from Boston Children’s could see us and we would make the drive. We just needed to get through the next five days to the appointment.

An obstacle to overcome

Those five days waiting to get a second opinion passed by so slowly. Having your child in pain just hurts the heart so much. My anxiety was high, I was still trying to juggle work and homeschooling my son, and I couldn’t do a thing to help my daughter.

On the drive to see an orthopedic at Boston Children’s my daughter broke my heart with her soft question, “What if they can’t find out what’s wrong?” I assured her the best I could and while the Xray didn’t reveal anything they did order an MRI to get a better look. The doctor was thinking of a couple of possibilities including sprains or tears. But booking an MRI takes time and my daughter would just have to make it through until then.

We did manage to get her back to school after Thanksgiving break. Starting with half days, crutches, a knee brace, a pass for the elevator, and a note letting the school nurse give her pain meds as needed. Her leg would swell up sometimes and turn red/purple and back to really pale. She complained of her foot feeling numb. And I could no longer rub her leg to help warm it up telling me it would burn and tingle like pins and needles if I touched it.

The MRI itself was uneventful. Though extending out her leg and keeping it still was extremely painful for her. While we had seen some minor improvements in pain while we waited for the MRI appointment but the pain came back in full force after it.

It was my husbands birthday in early December when we had a follow up call with the orthopedic. They walked us through the images. She did have an injury to the back of her knee. Apparently she had a cortical desmoid, a benign growth, right where the calf muscle attaches to the femur and the muscle had pulled on it. They weren’t sure of the healing time but weren’t too concerned. Rest, ice, compress, and elevate and then see us in six to eight weeks.

I mentioned the other sensations my daughter was experiencing with the reply that the nerves could be over-sensitized from the injury but it should resolve itself along with the injury.

So we waited. Slowly my daughter weaned off most of the pain medications. “They don’t work so why take them?” was her thought. Though in general she did feel like her overall pain was going down. But the strange burning and pins/needle sensations in the leg kept right on. Even spreading from mid-thigh to ankle with complaints that her foot felt like paper.

The holidays were strained. The constant stress was getting to me and on top of it all we found out that my mother-in-law needed an emergency heart bypass.

The tension rises

My husband was dealing with the extreme complications that happened during his mother’s heart bypass. We did not know if she would make it and what the repercussions were going to be. He was spending as much time with her as he could while I tried to hold down the fort at home.

Our follow up with Boston Children’s didn’t happen until mid January. They seemed concerned that her pain levels and nerve sensations were still unrelenting. The follow up Xray didn’t give conclusive evidence to the level of healing so they recommended a CT scan. They also referred us up the chain of orthopedic doctors to the head of the orthopedic division of Boston Children’s.

The CT scan had my daughter writhing in pain. Keeping her leg out stretched and still for 15 min left her pale and sweating and in even more pain then she’s become accustomed to. She’s disheartened that they’ll ever find answers. And to tell the truth, so am I. How can this injury be almost healed and she still be suffering this much?

I was an anxious ball of energy on January 22nd when we finally got back to Boston Children’s to see the head of orthopedics. He breezed right in and listened to us for a few moments before asking if we had ever heard of complex regional pain syndrome or CRPS. The knee injury was healed and what we were dealing with was something more insidious.

He explained the basics. That she was dealing with an amplified pain response. The skin sensitivity? Allodynia that is a common symptom of CRPS. We needed to go see the Boston Children’s pain treatment center and until then get started on physical therapy and various desensitization techniques. He seemed upbeat that she would make a recovery even if it would take a bit of work to get there.

I left the appointment hopeful. It felt like we could finally do something. Physical therapy was doable. The desensitization techniques of rubbing various texture on the skin or using a TENs unit seemed doable. My husband was upbeat too. We had a diagnosis that fit the symptoms and steps to do.

It wasn’t until later that night I decided to research a bit into CRPS and everything came crashing down. While my daughter has a lot of things going for her, in terms of her having a good chance of CRPS going into remission, the stories of people of those who don’t… it terrified me. When you have a diagnosis for your child which is sometimes referred to the world’s most painful incurable condition… What on earth do you do?

Everything changes

I went on auto-pilot for a couple weeks. Fake smile, enthusiasm, and getting shit done mode. We found a physical therapist that my daughter loves. She started making progress on using her leg. The desensitization techniques were the hardest to stay on top of.

When we started she couldn’t stand the touch of a cotton ball on her leg. A few weeks later, she could stand a couple of touches. We had moments where it seemed like we were making great progress. Then days where she tried to put tights on to dance class, where she sits and watches, and was in agony the whole time, from the simple feeling of the material.

It took nearly a month to get an appointment at the Pain Treatment Center which was both very quick and excruciatingly slow. A big snow storm was predicted the day of the appointment, which caused another patient to reschedule. That allowed us to have all five specialists with us in the room at the same time.

They agreed, CRPS.

Our task was to continue with physical therapy, add in CBT therapy, focus more on desensitization and see them in four weeks. They also had lots of handouts, video/book recommendations, apps for my daughter to have on her phone with meditation techniques, and a push to attend the Comfort Ability workshop that they host. They were reassuring that pediatric cases of CRPS have better outcomes. Early treatment leads to better outcomes. Treating it aggressively has better outcomes. This is something I have to believe.

And so that’s what we did. I ordered all the books both in print and the audiobook versions for car listening. We found a CBT therapist that had availability and took our insurance after more phone calls than I can count. We kept up with physical therapy and stressed the desensitization practices. Little by little we saw some improvements.

First she could straighten her leg. Then she could put the smallest amount of weight on her foot. Then a bit more. With time she could get about mostly with one crutch. Then a few steps without help. Then back to the crutch. By early March she started walking by herself and only occasionally needing a cane.

Luckily a spot opened up for the Comfort Ability workshop we were waitlisted on. It was for both parents and kids, though we were in separate areas. It was heart wrenching hearing everyone’s stories about their children. But it felt good to hear from the specialists and get tools in our toolbox.

We left the workshop in a good mood. My daughter was grinning ear to ear because while we worked through a binder of information she was doing aromatherapy, art therapy, and learning meditation and comfort techniques.

It all unraveled and came crashing down later that evening. She hadn’t wanted to mention it because she was scared of what it meant, but the allodynia, the extreme skin sensitivity, had been getting worse. The workshop and talking with other adolescents who had been going through chronic pain had given her the courage to speak up.

The allodynia… instead of being confined to her left leg had now spread to her right leg.

Back to being terrified I go.

Where do we go from here?

So that’s where we are at. Boston Children’s has recommended that my daughter attend the in-patient Pediatric Pain Rehabilitation Center when a spot opens up along with monthly check-ins until then. We are continuing with all the therapies they recommended and I’m trying to keep spirits up.

The fact that we see improvements has been keeping me hopeful. As long as the upward trajectory remains we can handle a few set backs. I debated in posting this to my blog. It’s far more personal than I normally share. But at the same time I really found some solace in others who posted about their stories for anyone to find.

Ultimately I hit the “publish” button in-case another terrified parent is searching the internet at night about pediatric CRPS and wondering what it all means. Well, I can’t answer anything about what it all means… but you’re not alone.

I’ll come back here periodically and link to any updates I make. ## CRPS Posts and Updates:

• Mar 20, 2024: The longest four months - a journey into the world of pediatric chronic pain* Apr 25, 2024* Jun 2, 2024: A journey into the world of pediatric chronic pain - a continuation* Sep 21 2024: A journey into the world of pediatric chronic pain - a new normal