Mom on her son's fight with a rare neurological condition: "A disease that makes you think you are losing your mind"
At the age of 10, Jed Kagan from Cape Town started experiencing unbearable pain that had doctors perplexed. Mom Shana explains how her son went from sufferer to hero.
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For a parent, witnessing their child in any kind of pain or ill health can hurt more than if it was happening to them. 

And it was exactly this kind of feeling that plagued Cape Town-based mom Shana Kagan when her 10-year-old son, Jed, suddenly started experiencing inexplicable and intense pain. A nightmare that would endure for the next four months. 

I chatted to Shana, who shared the whole story with us.

The burning pain started in Jed's knee as he and older brother Liam played cricket, and after sitting down to rest, Jed discovered that he couldn't stand again. 

"Jed was sitting on a chair... and started screaming in agony and could not walk," Shana told me, recounting how it all began.

At first, the family thought a bath would help, but instead the warm water brought on even more pain. "Jed screamed blue murder and there was nothing we could do about it,” she recalls. 

The following day, Jed’s ailment only worsened and around midday, the family managed to get Jed to a hospital. 

An X-ray and several blood tests later, doctors still couldn't find the cause of Jed's severe pain. With a clean bill of health and anti-inflammatory medication, the family returned home hoping their son’s condition would improve. 

"We thought it may be a sprain, but it got worse and worse. We knew it was something strange. I took Jed to the emergency unit, but they were unable to find anything wrong with him, which made it more scary," she said.

The pain persisted and magnified at a consistent pace, and after a few days of suffering, Shana and Jed's GP, Dr Lauren Lee, arranged a thorough investigation of Jed's blood work.  

Streptococcal infection? More tests, more disappointment, more pain

Finally, a diagnosis was made. 

A streptococcal infection – a bacterial infection usually affecting the throat or skin, and in Jed's case, the body's soft tissue – was identified as the cause of the young boy's terrifying ordeal. 

“The virus settled in his knee making him unable to walk without crutches," explained Shana, adding that the diagnosis made sense to the family since Jed had previously been infected with the bacteria when he was 2 years old. 

But relief gave way to continued concern when, despite a heavy dose of prescribed medication, Jed's state remained unchanged for the next two weeks. 

"Jed was given every kind of pain tablet imaginable, even adult suppositories. Unfortunately, none of them helped the pain. Eventually, we gave him rescue remedy which seemed to help him a bit, just to relax and sleep. He was [also] given antibiotics for the strep knee." 

Riddled with pain, Jed was subjected to another round of testing including an MRI scan, additional X-rays and blood tests, even an ultrasound of the stomach – all leading to nothing but dead ends.

Breakthrough

But then there was a breakthrough assessment with Dr Solly Zieff, a medical geneticist and paediatrician based at Christian Barnard Hospital who specialises in diagnosing rare illnesses in children. 

Dr Zieff noticed that the leg that was troubling Jed appeared discoloured in contrast to his other leg and was also cooler and somewhat swollen. 

The doctor recognised these symptoms, and a nuclear medicine scan confirmed his suspicions.

The root of Jed's pain was conclusively determined to be Complex Regional Pain Syndrome (CRPS) – an often misdiagnosed and rare neurological condition affecting the nervous system, causing relentless, unbearable pain.

Some sufferers describe the pain as a burning sensation, and others as a feeling of being stabbed or crushed. 

"Dr Zieff had never diagnosed a child with CRPS before Jed in over 50 years of practising as a paediatrician," Shana told me. She never forgot Dr Zieff's words of encouragement, that for children, treatment was usually successful. And he warned her to stay away from searching the internet about the condition. 

"I always remembered his words and knew we would come out on the other side, but did not know how or when, or where."  

Just the beginning 

But this diagnosis was just the beginning for the Kagans. After a long search for treatment, Shana discovered that the anaesthesiology department at the Red Cross War Memorial Children's Hospital had previous experience with treating CRPS, and is one of only a few medical institutions worldwide with the correct equipment to treat those affected by the disease. 

After the first round of treatment – a 12-hour Ketamine drip – Jed's pain finally began to subside. And after just four days, Jed could return home, finally pain-free! With additional medical care in the form of physiotherapy, Jed could finally walk without the aid of crutches. 

Jed is only the tenth child in Africa to be treated for CRPS. 

Shana happily credits staff at the Red Cross for the amazing care given to Jed during his time there and his speedy recovery. 

“We felt so accepted. It is a difficult disease to explain and to comprehend. Here, they had seen it all before and they were encouraging and nurturing, caring and empathetic to Jed and to all of us."

Despite the months of agony, the Kagans remain positive and thankful for the experience. 

"We have all changed, Jed has become more empathetic to others. We were humbled by this experience, it was very traumatic... mentally and physically. It is a disease that makes you think you are insane as no-one knows anything about it, or can help." 

From sufferer to hero 

Jedi Tedi NPO

Inspired by their journey and the many families they met while in and out of hospital, Shana created an NPO called Jedi Tedi – through which the Kagans and a team of volunteers hope to not only raise funds for the Red Cross Pain Clinic, but also awareness about the little-known condition. 

Shana playfully refers to their work as "(Jed)ucating" people about CRPS. 

"Jedi Tedi came about as we wanted to pay it forward to thank the hospital for its wonderful work. They are all amazing and go beyond their call of duty. We decided to make 'Tedis'... then people wanted to buy them, so we started selling them to donate the money to the pain clinic at the hospital."

Complex Regional Pain Syndrome (CRPS)

They've already raised a phenomenal R24 250 through the sales of the adorable handmade teddy bears, and plan to continue their efforts, something young Jed has become very passionate about. 

"He hopes he can encourage other CRPS sufferers to get better. He is called to Red Cross on occasion to help the CRPS patients during their treatment – if they see that he is okay, they know that they can also be okay."

Find out more about how you can help their cause by visiting www.backabuddy.co.za

Watch Jed's incredible journey here: 

Do you have a similar story? Share your family's journey with the Parent24 team by emailing to chatback@parent24.com and we could publish your letter. Do let us know if you'd like to stay anonymous.  

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