The mother of a child with JHS explains why it is important not to dismiss a child's pain as just 'growing pains'.

 

 

'When Merrily, my ten-year-old daughter, complained this summer that the sole of her left foot was sore, I was surprised to find a large lump in the arch. Our GP put it down to ill-fitting shoes (she lived in Ugg boots at the time), which appeared to have caused a band of ligaments across the arch of her foot to become inflamed. The Uggs were binned, and the swelling should have gone down within a few days. Instead, over the next couple of weeks, the lump got bigger until it became so painful she couldn’t walk.

 

A trip to casualty gave us crutches, but no answers.  She was examined by four doctors and X-rayed, but nobody could work out what this lump was.  We were urged to get a referral to an orthopaedic surgeon.

 

Three weeks after this started, Merrily was in constant pain.  Her passions are ice-skating and dancing, so to see her on crutches was heartbreaking.

 

When we saw the orthopaedic surgeon a week later, he wiggled her feet around, bent her knees and manipulated her arms before taking hold of one of her hands.

‘Watch this,’ he said, and promptly bent Merrily’s thumb so far back that it touched her wrist. I was horrified – we were here to get a diagnosis on her foot, yet this consultant appeared to be torturing my little girl’s hands. Then I realised Merrily hadn’t so much as flinched. Nor did she when he bent her whole hand back until it was almost flat.

 

Symptoms in children are often put down to growing pains or simply having a moany child.

I’m afraid to say my own daughter is a classic example of this.  As a toddler she would cry for her pushchair after walking the shortest of distances. As she got older she would sob during family walks, saying her legs hurt. My husband and I put it down to laziness and told her she was being a wimp.  When she complained of sore arms and legs at bedtime I told her it was just growing pains. When she said it was stopping her from getting to sleep, I thought she was playing up and told her to stop making a fuss. 

 

‘I hear the same anecdotes from so many parents,’ says Professor Grahame MD, FRCP, FACP.

‘The child’s muscles aren’t strong enough to cope with the fact that their connective tissues are so flexible. They have to work incredibly hard just to put one foot in front of the other and stay upright. ‘By the evening they’re exhausted. It’s like when someone first goes to the gym – they lie in bed aching. A child with HMS will feel like that most nights’

 

Now we know what we’re dealing with, there’s lots we can do to help Merrily. Even her fingers bend back further than they should, which explains why she’s complained all through school that holding her pencil hurts.  She now has a laptop and special fat pens and pencils.

We treat her pain with paracetamol and ibuprofen. We’ve also started using a small gadget on her called Acticare TSE, which attaches to her back, sending millions of electronic pulses through the skin into her spinal cord to suppress pain signals. ‘Certain nerves carry pain exclusively,’ Professor Grahame said.  ‘If you can occupy them with other impulses they don’t get a chance to register pain.’

 

[For some people, having asymptomatic hypermobile joints may even be seen as an advantage] ...‘It can be a help in sports such as gymnastics or dancing,’ says Professor Grahame.  ‘And this flexibility can be a huge advantage for [asymptomatic] musicians playing string or keyboard instruments. The condition just needs good management.’

The key to this is getting fit and strong, and staying that way. The more flexible a joint, the more muscle strength it takes to keep it within a normal range – if the muscle isn’t strong enough, the joint hyper-extends, causing injury.

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[For a small percentage of the population however, symptomatic hypermobility can be a sign of more serious underlying disorders, although the levels of severity and the originating aetiology (causation) can differ significantly. Such disorders include hypermobility spectrum disorder, Ehlers-Danlos syndrome, Marfan syndrome, Stickler syndrome and osteogenesis imperfecta. 'These conditions are associated with complex and multi-systemic problems. There is also growing awareness that some people with 'milder' variants of the hypermobility syndromes have added complications beyond hypermobility and pain, that include autonomic disturbances.' (HMSA 2016)]

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[Fortunately, in Merrily's particular case] treatment was simple. Casts were made of each foot, then special moulds, called orthotics, were created, which slip inside her shoes to correct her gait. Within six weeks the bone healed and Merrily came off crutches. To see her back on her feet was wonderful.

 

Parents who think their child might be hypermobile needn’t worry unless it’s causing problems. But if it is, a GP can refer them to a (specialist) physiotherapist. Severe cases can be seen at one of the country’s three hypermobility clinics.

 

Meanwhile, my daughter is still milking the fact that her terrible parents didn’t believe her all the times she said she was in pain.  She reckons that hearing a consultant tell us we’d got it so wrong was worth two months on crutches.

 

It is best to address hypermobility issues at a young age to get the help needed to manage the condition.

 

(By Rachel Halliwell) 

 

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