Mon. Nov 29th, 2021

Imagine bending down to kiss your baby goodnight and just the movement of your hair can make them scream in pain? Mother, Melinda shares her story with journalist Carrol Baker.

My son has a rare condition called Complex Regional Pain Syndrome (CRPS). It’s been two and a half years of pain and suffering for Cooper, and it’s had a devastating effect on our family.

He has told me “sometimes wearing clothes can make my skin feel like it is wrapped in barbed wire, set on fire and I get an electric shock all at once.”

It all started when Cooper was nine, playing tag with some friends. He hurt his knee but seemed to be okay. There was no visible injury and he went to school the next day. But four days later he woke up screaming in pain and could not put his right foot on the ground so he could not walk.

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Cooper CRPS

Melinda and her son Cooper. Source: included

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No one could help my son

He has a history of broken bones, so it was my first thought that he had broken something again, but that was not the case. A doctor sent him for x-ray and ultrasound. Seven weeks, and many more doctor visits and tests later, we desperately needed answers.

We did not get any closer to finding out what was wrong – the only thing that came up was a minor inflammation.

Then at a fracture clinic he saw the orthopedic specialist who had recently learned about a rare condition called Complex Regional Pain Syndrome (CRPS), so we had an answer. It is as if his nervous system is on and does not turn off by itself.

If you hit your knee, you know it can hurt for a while, but the pain will go away – but for Cooper, the message that goes back to his brain is that he is still in that state of injury.

Cooper CRPS

Cooper with his family. Source: included

After the CRPS diagnosis

There is not much research out there, but what we do know about getting in touch with other parents of children with CRPS is that it is important to be treated quickly with an interdisciplinary approach. This includes Physiotherapy, Occupational Therapy, Psychology and a good pain specialist. If they get to work quickly, it helps the nervous system regulate and turn down the neuropathic nerve pain.

We know there is a very good chance if he had had early intervention he may be in remission now.

Few doctors have heard of CRPS – which needs to be changed.

For Cooper, there is no warning when a flare-up will occur, the weather affects him, and lack of sleep is a secondary complication – he can sometimes wake up 20-30 times a night. There are no painkillers that can stop the pain and opioids can be addictive. Treatments are offered in the United States that parents have said have helped reduce the pain in their child, but they are not readily available in Australia for pediatrics that we can try.

Cooper CRPS

How Cooper expresses his feelings about his CRPS. Source: included

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My son has chronic pain – the worst kind known by science, I have to fight the medical system on his behalf while he fights this beast called CRPS. We feel unheard and disrespectful. The system needs to change at the level of the first respondent – so many doctors have never heard of it.

It’s so frustrating not to be believed when your child is in so much pain. What nine-year-old would come up with something like that? The first pain specialist said “let him walk around on his hands and knees, even on a dirty toilet floor at school, and if he really wants to, he will get up and go.” We were horrified. My answer to that, you honestly could not write in writing.

Fortunately, his comrades are there for him

At times, Cooper sits in a wheelchair – his most recent stay in one has been for over three months, he can not walk as the pain is too intense. He has not been able to get out of bed for days and sometimes months at a time. It can even hurt him to take a shower.

It may be lonely for him, but luckily he has kept in touch with old schoolmates so they can talk online, they can not see his pain, and he does not feel judged. We have been so blessed that he has the most amazing friends who have stood by him.

His brother Dylan is nine now and it’s so hard for him to see his brother in pain, they can not kick a ball or play together, he also misses something.

If Cooper can not leave the house, we will not go. Most days for him, his pain levels are at least nine out of 10. We have to take each day as it comes. If he does not have allodynia (the neuropathic nerve pain), then we can go out – but it can flare up in the car, so we may have to turn around and go home again. When he is able to, he loves to fish and swim – those days are long in between, so they are special to us.

I’m so proud of him, he’s my little warrior, he’s so brave and strong. He wanted to share his story because he told me if it makes a difference for just one person, it would be cool!

For more information on CRPS contact Pain Australia.

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