Mom fights for a diagnosis after toddler dismissed with “growing pains”

A mom was repeatedly told that her toddler was experiencing growing pains, but she knew it was more than that, and she continued to fight until she got answers.

When Skyla Smith was around 18 months old, she started waking up in the night, crying out in pain and pointing to her knee. As the problem got worse, the poor toddler continued to complain about her knee throughout the day, even refusing to walk because it hurt so much.

Her mom, Elaine-Maree Telfer, 30, told Newsweek that she felt “absolutely helpless” because, no matter what she tried, nothing seemed to work.

“I just wanted to take it away from her,” Telfer, from Scotland, said. “It broke my heart when she would say things like ‘mummy please help me’.”

Smith started limping whenever she tried to walk and wanted to be carried everywhere. Eventually, she just refused to walk because she was in so much pain.

After a while, Telfer also noticed an unusual lump on her daughter’s knee that only appeared when she bent her leg. That triggered her to go to the emergency room.

“That was the start of our year-and-a-half journey to find out what was wrong. I was told it could just be growing pains, but I remember thinking, ‘Surely not?’ She shouldn’t be in this much pain just to grow, and the lump must be something too,” Telfer said.

Telfer was reassured that it was nothing to worry about and the lump was likely bursitis (inflammation of the small fluid-filled sacs that cushion the joints). The doctors said, “It should go in four weeks,” but agreed to refer Smith to pediatrics if not.  

The pain didn’t diminish, and the lump remained the same.

It was impacting Smith’s daily life because the pain kept her up for hours some nights, making her tired throughout the day. Not only was it terrifying for her to be in constant pain, but it was heartbreaking for her mom to see.

“One night, she was up three times, so that’s when I decided to get an appointment at the GP instead of waiting to see if it went away. The GP told me it was nothing to be concerned about, probably just growing pains, but he would refer me as I was worried,” Telfer said.

A pediatrician also indicated that Smith could be experiencing growing pains and told Telfer not to be worried.

An ultrasound scan was taken of the lump, and that came back normal. Doctors also ordered an X-ray and blood tests to check her infection markers. While they initially came back fine, orthopedics ordered more blood samples, which showed that Smith was in fact positive for antinuclear antibodies. This is common among people with lupus, rheumatoid arthritis, scleroderma, and thyroid diseases.

Telfer continued: “Orthopedics reassured us that they didn’t think the lump was causing her pain, and they referred us to rheumatology who ordered a second ultrasound on the lump in a bent position. That confirmed it was Hoffa fat pad herniation and not contributing to her pain, but, without that lump, I’m positive we would have been turned away again.”

Smith subsequently had two MRI scans, a steroid injection into her knee, and another ultrasound scan.

After 18 months of tests, scans and confusion, Telfer was finally given the answers. Her daughter was diagnosed with juvenile idiopathic arthritis (JIA) in October at the age of 3 years old.

JIA can cause persistent joint pain, swelling, stiffness, fever and swollen lymph nodes. The Mayo Clinic explains that it can impact one joint or multiple, and complications may include eye inflammation or growth problems.

JIA occurs when the body’s immune system attacks its own cells and tissues. While it is more common among girls, it’s not known why it happens.

Smith didn’t experience any visible swelling, although JIA impacts both her knees, which an MRI scan confirmed, but she has also started complaining about pain in her arms too.

“When we got the diagnosis, I felt such relief to finally know what was wrong with her so we could start treatment as JIA can cause permanent damage if left untreated,” Telfer said.

“We manage her condition with weekly methotrexate injections, which also need weekly folic acid and ant-sickness to help with the side effects. She also has regular blood tests and appointments. I also have to rub her legs or arm regularly.”

Following the shock diagnosis, Telfer has shared her daughter’s journey on TikTok (@_emtx_) to highlight the importance of trusting your instincts. She urges other parents to keep fighting for answers even if they’re dismissed initially.

A post explaining that Telfer was repeatedly told there was “nothing to be concerned about” and it was likely growing pains has gone viral. In just a matter of days, the TikTok post has generated over 672,000 views and more than 15,000 likes on TikTok at the time of writing.

Many people have reached out to Telfer to share their own similar experiences with JIA and thank her for sharing such an important message.

Telfer told Newsweek: “You should always advocate for your child because parents know best. Keep pushing for answers if you’re not happy and think there’s something not right. A lot of people including health care professions don’t know about JIA, it needs more awareness.”

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