Kimberley is urging parents to believe their children’s pain and never stop advocating for a diagnosis. Photo: Supplied.
A Kiama mum has spent years fighting to help her son who suffers from chronic pain, after she said his symptoms were dismissed, misdiagnosed and disbelieved.
Kimberley Grima knew her son was struggling with something unseen from a very young age.
“Jett didn’t speak until he was five,” she said. “He was non-verbal and we didn’t understand why.
“We found that his tonsils were so enlarged that he couldn’t speak properly.”
He had surgery at age five to remove his tonsils and adenoids which allowed him to communicate, but his suffering continued.
“He was telling us that he had a sore head all the time,” Kimberley said.
“The pain kept going and going and going and he kept getting migraine after migraine.”
They took Jett to appointment after appointment including to pediatricians, optometrists and ophthalmologists to find the cause, but his condition was often flagged as being the result of a lifestyle or pre-existing factor.
“Everyone kept saying it’s too much TV, too much technology, until it came to the point where Jett was in that much pain that he was missing school,” Kimberley said.
“The main thing they kept saying was that it was growing pains or just part of the autism.
“They kept denying that a kid could have chronic pain.”
He later developed chest and ankle pain and even after his migraines were diagnosed, the medication took a significant toll.
“It caused him to put on a lot of weight really quickly,” Kimberley said. “Jett ended up having a nervous breakdown because his ankles were hurting more because of the extra weight and they just kept telling him to lose weight and less technology.
“A lot of people were saying that he was making up the pain to miss school, and that just wasn’t true.”
They were unable to access support from his school without a diagnosis, which left Jett often being sent home if a flare-up occurred.
“It was to the point where you feel like you’re failing as a parent,” Kimberley said.
“You can see your child is in pain, you can see that something’s not right, you can see that they’re not putting it on like people think, taking them to where they need to go, paying all of this money to basically be told there’s nothing wrong with your child.”
They travelled out of the region to get further opinions, causing emotional, financial and physical distress for both Jett and Kimberley, who also lives with chronic pain.
Finally a diagnosis provided some relief and allowed Jett, now 13, to have some control and support with his symptoms.
“Now that we’ve got a diagnosis we know who we’re meant to be seeing and who can help us,” Kimberley said.
“It helped us get on the right path and be able to put things in play for him so that he has a very clear care plan and he can work out his limitations.”
But while the family have overcome many of the medical obstacles associated with Jett’s chronic pain, Kimberley said the community still needs greater awareness, with Jett often subject to criticism and shame.
“Pain is invisible and because you can’t see it people don’t think about it,” she said.
“People thought he just was lazy because he doesn’t want to run at the athletics carnival.
“He was pushed to push through and then it took him two weeks to get back on track because it caused a flare-up.
“All it does is kill their self-esteem.”
With one in five kids living with chronic pain, Kimberley urged families to keep fighting for a diagnosis.
“Believe your child. Ask those questions. Join support groups. Get everything down in writing. Keep notes of when there’s a flare-up, what they were doing, how long it took for them to recover, what actions you took,” she said.
“Keep advocating, keep pushing, and get that second opinion if you’re not happy with that first one – you’re not doctor shopping, you’re doing what’s best for your child.”
For more information about children experiencing chronic pain, visit the Chronic Pain Australia website.
