When In Doubt, Refer It Out

A recent anecdotal story on why it is important to pay attention to clinical red flags and refer out to other practitioners for more testing when needed…

I have been a therapist for a long time, and I have worked in a lot of settings. I have worked in inpatient therapy, outpatient therapy, medical daycare, within school systems, and in the home. There is not a lot I have not seen. But recently, I had a case that was new, different, and made me glad that Physical Therapy School had ingrained certain fail safes and checkpoints. I had a friend and colleague of my husband reach out with a child that had tailbone pain. I felt well equipped to work with this child due to my pelvic floor and pediatric experience.

I met with the child and parent, and we discussed what had been done so far in terms of medical assessment and testing, and what our next steps should be. The child had been seen by both primary care and an orthopedic specialist, and therapy had been recommended. During the assessment, it was clear there was some sacral nerve irritation, and this was treated hands-on. The family was sent home with a home program. I checked in weekly with the family, and the problem seems to resolve in a reasonable time frame. The child was able to return to their very level functional activities.

A few months later, the same parent reached out because the child was experiencing a new problem. The history of the new symptoms were a little fuzzy. Like last time, there had been no specific injury or episode that triggered an onset of the new pain. The pain was now in the ankle, and had been going on for a week or so. The parent reported that another child in the class had crutches, and this had made the child I was working with want crutches and start to walk around with an unusual gait pattern. The parent reported that the child continued to limp around and was not complaining of pain, but their walking has not returned to normal.  

Now it’s time to take a flashback into my past. When I was about 8 years old, I woke up one day and was unable to put weight on my hip. My mom thought I was being a drama llama at first, but after a day of resting it, she realized that maybe I was being truthful. We went to the pediatrician and they diagnosed me with something called “toxic synovitis” now also known as “transient synovitis.” This is an inflammation of the hip joint. The cause of the inflammation is unknown, but it can be after a recent virus or infection. The triggering infection is usually a few weeks prior. This diagnosis usually happens only on one side, and can cause pain starting in the hip, moving to the knee or ankle. I got to spend a week being pulled around in a wagon by my mom. 

Transient synovitis is most common between children ages three to ten years old. It is two times more likely to happen in boys than girls. This diagnosis will not show up with blood testing or x-rays. Transient synovitis is different from septic arthritis, which is a more serious condition that is an active infection in a joint. Typical treatment includes rest, NSAIDs, and re-assuring the child they are safe and that this pain is temporary. 

Flashforward to spring of 2002, when I ran a whole track season on a stress fracture. My school’s athletic training insisted I just had really bad Achilles tendonitis and shin splints. He gave me heel cups and prescribed ice baths. After limping whenever not running and being in tears when anything touched my outer shin, my mom found out how much Ibuprofen I was taking to get through my days. She brought me to the pediatrician, and I had a pretty awful stress fracture of my right fibula when they did my x-ray. I needed a good month of rest to heal. Some of the signs of a stress fracture include pain and swelling of the location, point tenderness (which is where one area is particularly painful), and abnormal gait (if the fracture is in the lower extremity). 

Flashforward to early college years, when I spent the summer babysitting for a little girl with juvenile rheumatoid arthritis. I will never forget her mother telling me the story of her diagnosis. The story of how there was no specific injury, but that the child has begun to limp and have joint swelling of her knee after waking up from her nap one day. This is something I have unfortunately been the first medical provider to screen for with children with irregular gait patterns. It is another common cause of limping occurring out of the blue, with no specific injury or clear trigger. Juvenile rheumatoid arthritis is an autoimmune disorder diagnosed with multiple tests including, but not limited to, blood work and x-rays. JRA can have all sorts of long term health implications if left undiagnosed, and so it is important to rule these things out when questionable symptoms are present.

I give you these flashbacks to let you know where my clinical mind was when this family came to see me. They had sent videos, which I had requested, and I had seen her abnormal gait cycle where she has been weight bearing on the outside of her foot. I am of the mindset that every child’s goal is to be as functional as possible so they can live their best life. I had no doubt that this child had “crutch envy,” but no child wants to move in an inefficient way, because that gets in the way of fun activities of daily living. The family has also had COVID a few weeks prior to our visit. So I went into the visit thinking, “Hmmmm, maybe transient synovitis? Maybe a stress fracture from dance? Worst case scenario, maybe juvenile rheumatoid arthritis check?”

As soon as this child walked in and went up the steps to my treatment area, I could see how much difficulty they were having. Even if not complaining of pain, I could tell that the body was experiencing something that limited the weight bearing on that limb. Since physical therapists are considered musculoskeletal experts, I assessed the lower extremity range of motion and strength. Both sides were pretty equal, and nothing seemed to be going on in the hips or knee, but the ankle had definite point tenderness in one area. With the symptoms this child had experienced prior, and my knowledge that something this small could be the start of something bigger, I explained to the parent that prior to starting physical therapy for weight bearing and gait training to restore normal walking pattern, the child should go to urgent care to rule out a stress fracture. I also explained that they should definitely follow up with the pediatrician for routine blood work just to be safe. 

The next part of this story gives me chills. I am so glad I trusted my PT and mommy gut. They went to urgent care and the x-ray was irregular. They were transferred to another local hospital and the x-ray still did not look right and had a suspicious “grey blob.” They were ambulance driven to CHOP, our local pediatric specializing hospital. This child and her family have been through it. This kiddo needed two MRIs, as well as an ankle surgery and two biopsies. The doctors had a lot of diagnoses on the table, including the possibility of infection or cancer. 

The following words are from the child’s mother, with the gender neutralized to preserve their privacy!

“It turns out that our child has a very rare autoimmune disorder that sends the immune system into overdrive, creating inflammation (hello gray blob on ankle) that then “eats” at the bones and organs (hence the ankle pain). And that painful tailbone?….yep. That was the start (at the time bloodwork and X-rays were normal since it was the very beginning). 

Now what? A weekly shot to bring down the immune system (scary stuff during a pandemic) and an IV infusion every 90 days to build up the bone strength (the child has 5-6 hot spots including fractured vertebrae). And lots of scans, unpleasant side effects, vitamins, and medications in between. Possibly another ankle surgery if the growth plates don’t fix themselves. Today was the start of the infusion at CHOP. While we have a very long road ahead with some twists and turns, we have a diagnosis, a plan and the very best rheumatology team in the world.” 

I am so grateful that this situation had a somewhat positive and happy ending. With a bone infection or pediatric cancer on the table, the diagnosis of Chronic Recurrent Multifocal Osteomyelitis (CRMO) feels like a welcome outcome if there had to be a diagnosis. 

Some facts about CRMO:

• Also called chronic nonbacterial osteomyelitis (CNO)—is a rare disorder that causes inflammation of the bone. 
• CRMO is an autoimmune disease, in which the immune system mistakenly attacks healthy tissue and organs, causing inflammation.
• Children with CRMO generally experience periods of pain and swelling of the affected bones, followed by periods of remission with no symptoms. 
• It most commonly affects the long bones, and can also affect the pelvis or the spine. It is sometimes diagnosed along with inflammatory bowel disease or psoriasis.
• CRMO usually occurs in children around the age of nine or 10, and occurs more frequently in girls than in boys.
• Diagnosis of CRMO begins when a pediatric rheumatologist excludes the possibility of other diseases. Tests may include:
  • X-ray looks for damage to the bone
  • Magnetic resonance imaging (MRI) provides more detail than X-ray, and can detect bone lesions.
  • Blood tests can show elevated levels of inflammation
  • Bone biopsy rules out infection or cancer, and shows inflammation
• Treatment: 
  • Non-steroidal anti-inflammatory medications (NSAID)
  • Antirheumatic drugs, such as corticosteroids or methotrexate
  • Biologics, such as etanercept, adalimumab, anakinra, and infliximab. 
  • Bisphosphonates: pamidronate and zoledronic acid.
  • TNF inhibitors may be prescribed when CRMO is diagnosed along with inflammatory bowel disease (IBD) or psoriasis.

When treating patients, doctors and therapists are presented with different opportunities for differential diagnosis everyday. The best way to do our job is to take in all of the facts and make the best decisions with the information we have. In this case, there were a few “yellow flags,” and one “red flag” that made me think that treating this child was outside of my scope of practice prior to further assessment. The limping out of nowhere, with no onset of injury, was my first flag. The difficulty of doing normal childhood activities of daily living like walking and stairs was the second. The point tenderness was the last flag that let me know further assessment was needed.

The people pleaser in me would have loved to prescribe range of motion exercises, strength training, balance and gait training activities, and “wait and see,” but the signs and symptoms did not sit right with that plan of care. Luckily, this child’s family was in agreement with my recommendations, and our general area has a team of very qualified medical professionals capable of treating this very rare condition. 

Practically Yours,

Dr. Mo

Additional Information on TS and JRA: 

Transient Synovitis/ aka Toxic Synovitis/ aka Irritable Hip 

The most common cause of limping in children. It is due to inflammation (swelling) of the lining of the hip joint. Usually the child will have recently recovered from a viral infection. Sometimes, the condition occurs after a fall or injury. Seen in children aged between three and 10 years old. It is not serious, and will get better on its own with rest. Signs and symptoms of irritable hip may include a limp or difficulty crawling or standing and the child may complain of pain in the hip, groin, thigh or knee. Some children may just be refusing to walk, without explanation. Usually only one side is affected. 

Juvenile Rheumatoid Arthritis/ aka Juvenile Idiopathic Arthritis: 

Juvenile idiopathic arthritis (JIA) is a form of arthritis in children. Arthritis causes joint swelling (inflammation) and joint stiffness. JIA is arthritis that affects one or more joints for at least 6 weeks in a child age 16 or younger. Unlike adult rheumatoid arthritis, which is ongoing and lasts a lifetime, children often outgrow JIA. But the disease can affect bone development in a growing child. There are several types of JIA. To see more types, click here.