Osteoporosis in children

Idiopathic juvenile osteoporosis (IJO) is a form of osteoporosis that tends to occur in children from the ages of seven to the early teens. It’s one of the extremely rare forms of osteoporosis that affects less than 100 children in the UK.

Idiopathic means that there is no known cause, so this is a condition that develops in a previously healthy child or teenager and often no clear reason can be found. This can be very challenging for both the child and their family, as the future can often feel quite unclear.

Ahead of Rare Disease Day on 28 February, we spoke to two mothers, Kate and Laura, who both have sons living with IJO. They’ve both shared their experiences from symptoms through to diagnosis, as well as their hopes for the future.

Signs and symptoms

The symptoms experienced by children with osteoporosis will vary from child to child, but the common symptoms are:
• Bone pain often in the back, hips, legs and feet
• Difficulty in walking/limited mobility
• Fractures (broken bones) in the long bones of the skeleton such as legs and arms and in the spine. These may be causing pain in other parts of the body
• Curvature of the spine, or height loss because the bones in the spine have become compressed or misshapen due to fractures.

Laura’s 10-year-old son Alex was diagnosed with IJO in 2020:
“In October 2020, my son Alex started to complain about back pain. It got so bad that he started crawling around on the floor. We took him to the doctor who said to come back if it didn’t get any better.”

The first sign that children may have IJO is bone pain and walking difficulties, but when investigated further they are found to have compression fractures of the bones in the spine (vertebrae) and may develop long bone fractures especially around the weight-bearing joints.

“A couple of weeks later he was walking down the stairs and sneezed. As he sneezed, he dropped to the ground in pain. We took him back to the doctor immediately who arranged blood tests and an x-ray. The x-ray showed spinal fractures and the bone inside didn’t look as dense as it should.

“After various other tests were completed on Alex to rule out other bone diseases, they completed a DXA bone density scan, and Alex was then diagnosed with idiopathic juvenile osteoporosis. They explained that idiopathic means there was no known cause for his osteoporosis.”

Drug treatments

The diagnosis of osteoporosis and decisions about medications is not clear-cut in children. The severity of each case and response to treatments can differ from child to child. This means that their management and care will come from a team with specialist expertise in paediatric bone health. A referral will be needed, usually to see a paediatric endocrinologist first of all.

Laura:
“Once Alex was diagnosed in our paediatric department, they started him on bisphosphonate infusions given via a drip every twelve weeks. These infusions mean Alex has to sit in the hospital for two days every time he has them, which can be very lonely and strange for him.”

Drug treatments that are used for adults with osteoporosis are often not licensed for use in children. This means they haven’t been specifically tested on children to see if they work and are safe. It will be up to the discretion of the doctor whether to use them or not.

Kate’s 13-year-old son Morgan was diagnosed with IJO in March 2020:
“After diagnosis, Morgan started having six-monthly infusions of osteoporosis medication to strengthen his bones which have helped. Medical specialists have been quite helpful in choosing the best medication for him, but I understand there are not many options out there.

“Morgan started using a wheelchair when he was diagnosed as he was in so much pain because of his spinal fractures. This was quite a challenge to adapt to as a family, so we were relieved to receive the diagnosis and start treatment. The medication has helped Morgan walk a little bit again instead of being in his wheelchair full time, but he still has to sit down often.”

Adapting and looking ahead

Kate:
“We’ve adapted our day-to-day life quite a lot to fit Morgan’s needs. We’ve had a stair lift put in the house as he struggles to walk upstairs now and he’s very nervous of bumping into things in case he breaks a bone. We’ve adapted physical activity he enjoys too – he used to love trampolining, but we’ve switched to activities like swimming to give him as much relief as possible.

“I often get people telling me it’s good news that Morgan’s been diagnosed early, but to me it doesn’t feel that way when I can see the debilitating effects on him day-to-day.”

Sometimes the condition can get better as the child gets older when their hormones change, but unfortunately for a lot of people there is no clear indication as to whether this will happen or not.

Laura:
“I think the worst part is Alex having something so rare. It’s been a very lonely road as a mum and I feel that as it's a rare and chronic illness, many people don’t understand the impact that this has. Nobody can tell me how this is going to affect Alex going forwards and I wonder whether it will have any detrimental effects on him going into adulthood.

“It’s important for people to know that this isn’t something that happens just to post-menopausal women. Idiopathic juvenile osteoporosis is very rare but it shows it can sometimes happen to much younger people, and there should be greater awareness of this. I feel hopeful that with greater awareness will come greater research and understanding of the condition.”

Information and support

For more information on idiopathic juvenile osteoporosis, please see our fact sheet here or contact our Helpline to speak to one of our specialist nurses.

For further help and support, please contact your healthcare professional. You can also contact the following charities:

The Brittle Bone Society
A UK charity providing advice, signposting and information relevant to children with osteoporosis.
• Helpline: 01382 204 446
• Website: brittlebone.org 

SCOPE
Offers free, impartial and expert information, advice and support for people with disabilities and their families.
• Helpline: 0808 800 3333
• Email: response@scope.org.uk

Strongbones Children’s Charitable Trust
A national charity set up to help alleviate the pain, suffering and financial burden of families who have children with bone problems.
• Helpline: 01708 750599
• strongbones.org.uk

Contact a Family
A national charity that exists to support and connect the families of disabled children, whatever their condition or disability.
• Helpline: 0808 808 3555
• cafamily.org.uk