How to advocate for a child with an invisible illness

When a child has a physical, mental or neurological condition that’s not visible to observers, getting a medical diagnosis can take some parental pushing.

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“I think our daughter might be a bit of a lemon,” I joked to my husband one winter afternoon. After a six week stint with a nasty case of shingles and three more weeks struggling through pneumonia, she awoke that morning complaining of pain and stiffness in her left knee. I made an appointment with her pediatrician, who took blood and an x-ray and diagnosed her with growing pains.

My daughter, Isabel, was 10 at the time. It would take two more years of her cycling through a variety of illnesses and symptoms—including vague ones like fatigue and mild rashes—plus multiple visits to physicians and urgent care clinics, for her to finally be diagnosed with Juvenile Idiopathic Arthritis (JIA).

Juvenile Arthritis fits alongside conditions like Crohn’s Disease, cardiac diseases, diabetes, and mental illnesses into the challenging category of invisible illnesses. According to the Invisible Disabilities Association, an advocacy organization working to increase public awareness and sensitivity, an invisible illness or disability includes any “physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker.”

Getting an accurate diagnosis
It is precisely the invisibility of such illnesses that makes them so difficult to diagnose. Many symptoms are not immediately apparent. “There is always a balance between suspecting something is wrong and there really being something wrong,” explains Anne Fournier, a paediatric cardiologist at Montreal’s CHU Sainte-Justine Hospital. Fournier is quick to add that it can also be a challenge to narrow the symptoms of many invisible illnesses down to one disease.

parent of new diagnosed child getting news Open letter to parents of a child who is newly diagnosedEmersyn Wiebe of Saskatoon, Saskatchewan, saw six different pediatricians before she was finally diagnosed with Oligoarticular junior idiopathic arthritis at almost two years of age. She had reverted to crawling then stopped moving all together, by the time she got her diagnosis.

According to Harry Gewanter, a paediatric rheumatologist and Medical Director at Medical Home Plus, Inc. in Bon Air, Virginia, “The reality is that most of this stuff creeps up, so subtle changes become background noise and nobody notices it until, at some point, you go, ‘Enough!’”

Because an issue might be present long before it is noticed, it is vital that parents advocate for a swift diagnosis, as soon as they become aware of their child’s ongoing symptoms. Delaying the diagnosis of an invisible illness, says Carole Lieberman, a California-based child psychiatrist, “Can have lifelong consequences.”

Signs and symptoms to look for
Fournier encourages parents to take note of unusual behaviours or sudden changes in the behaviours of their child, especially “if the child doesn’t continue to act as they used to act.” She cautions parents not to ignore or minimize such changes, even though it can be hard to admit that our child might be sick.

It’s equally important to pay attention to what might seem like minor changes. Lee Bass, attending paediatrician at Ann & Robert H. Lurie Children’s Hospital of Chicago, Illinois explains, “Presenting symptoms can be so subtle. With Crohns, sometimes it can be that the child feels slowly more fatigued or is going to the bathroom one to two times more per day. It can take some time for these symptoms to get to the point that the parents notice and seek medical attention.”

Gewanter encourages parents to watch for indications that their child is over-compensating for pain or weakness, such as favoring one leg or sitting out a favorite activity. “All of us tend to adapt to small changes and adjust what we do. You are going to start seeing the compensations they’re making; you start to see a pattern.”

Trust your instincts
Given that autoimmune diseases run in my family, my instinct was to have my daughter tested for systemic issues. “How many 10 year olds get shingles, and then pneumonia?” I asked myself. But I also didn’t want to believe my 10-year-old could have a chronic illness. So when her pediatrician chalked her knee issues up to growing pains, I was eager to accept that assessment.

Both Lieberman and Fournier agree that denial on the part of the parents can easily override the instincts propelling them to protect their children. It’s important to return and see your paediatrician—or get a second opinion—if symptoms persist and an initially reassuring—and inadequate—explanation just isn’t adding up.

Kerry Beatty of Chatham, Ont., pushed to get a diagnosis for her three-year-old daughter, Ava, despite having four doctors tell her nothing was wrong. Beatty trusted her gut, though, and persisted until her daughter was referred to London Children’s Hospital, where she received answers and began immediate treatment. “I feel we, as moms/parents know when our kids are off, when something is wrong,” Beatty exclaimed. “Keep bringing them back until someone listens!”

Keep copious records
After an urgent-care doctor wrapped my daughter’s knee and sent her away with a diagnosis of a sprain, I started taking daily pictures of both her knees. Those pictures, combined with her personal health history and a complete family health history I’d written in timeline form, proved key to determining her diagnosis.

The symptoms of invisible illnesses can mimic those of myriad issues. Often, a diagnosis is obtained by process of elimination. To expedite this process, pediatric physicians need to examine a child’s full health portrait and history. Parents should begin to journal symptoms as soon as they suspect an issue. Deborah M. Levy, the Clinical Director of Paediatric Rheumatology at Toronto’s Hospital for Sick Children, suggests, “Bring any photos of rashes or videos you have taken of abnormal walking (for example).” She also advises parents to bring all health and family history available, vaccination records, recent travel history, test results and medications, if any, and records of “any unusual exposures to infections, animals or locations.”

“Writing out the process is huge,” Gewanter points out. “Because oftentimes when you start doing that, you see a pattern that you didn’t see before.”

Ask a lot of questions
If you are concerned with the conclusions drawn by your child’s paediatrician or specialist, you should keep asking questions until you feel satisfied with the answers and plan of action. Fournier says, “Pediatricians should be aware of the red flags. When the family complains of those red flags, they need to ask for basic testing, observations, and a questionnaire.” Gewanter, who often directs parents to reputable medical websites, encourages parents to come prepared with both questions and research.

Seek support
Receiving a proper diagnosis is often just the beginning. Most invisible illnesses are chronic in nature so parents need to keep observing, researching, and advocating for their child’s care. Fournier, who founded an institution for parents of children with heart conditions called Fondation En Coeur, suggests parents become immediately involved with the social networks associated with their child’s condition. “You cannot go through this alone,” she warns.

Likewise, it is important to seek a social network for a child with an invisible illness. When my daughter attended summer camp last year for children with arthritis, she not only felt a sense of community and understanding, but gleaned helpful advice so she could begin to advocate for herself. Life with an invisible illness can be hard to navigate at times, so it’s good to feel heard and seen.

Read more:
Your ultimate guide to the most common kid illnesses
The cost of raising a special needs child

 

 

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