Crohn's Disease Forum » Parents of Kids with IBD » ACI Pain Management Network website helps youngsters cope

04-26-2014, 03:24 AM   #1
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
ACI Pain Management Network website helps youngsters cope

FOURTEEN year old Lauren Cooper was cut off from friends and school by chronic pain until a new website taught her ways to manage the agony that drugs could not quell.

The Sydney teenager has battled cystic fibrosis from birth but 18 months ago complications of the disease began to cause excruciating pain in her abdomen.
Strong pain medication removed just 50 per cent of the discomfort and Lauren began to retreat from her family and friends, hibernating in her bedroom.
“It completely controlled her life, she was not going to school, she withdrew from her friends and family and wanted to be by herself,” says her mother Donna.

A battery of medical tests found nothing specific was causing the pain and she was diagnosed with hypersensitivity of the gut as a result of frequent bowel obstructions and an ovarian cyst.
“It is frustratingly hard seeing a child who is clearly in pain and not being able to make it go away,” says Lauren’s mother.

A new website by NSW Health Department’s ACI Pain Management Network featuring video of pain specialists and other teenagers has helped Lauren find new ways of coping with the pain that won’t go away.
The website contains tutorials that teach young people how exercise, diet, relaxation, imagery, mindfulness and positive thinking can help manage pain.
“The website has given me a whole variety of techniques and strategies,” says Lauren.
“If I’m in a lot of pain I close my eyes and imagine I’m somewhere else, I listen to lots of music and sometimes do meditation,” she says.

The website features videos of other young people talking about their own experiences of pain and Lauren says this taught her she was not alone.
Canadian pain expert and psychologist Dr Christine Chambers who was in Australia for the Australian Pain Conference says chronic pain is a disease in itself.
Pain is the body’s alarm system but in chronic pain the brain is interpreting signals as pain even after healing has taken place, she says.
Managing this type of chronic pain is about retraining the way the brain interprets these signals, “teaching the child strategies to turn down the false alarm or turn it off altogether,” she said.
Pain medication often does not work effectively because not every person responds to the drugs in the same way and access to a psychologist and physiotherapist is needed to properly manage chronic pain, Dr Chambers says.
Many children who could benefit from these experts live outside major cities and can’t access their help and this is why the website is such a good idea, says Dr Chambers.
Dr Chambers says one in five children will experience chronic pain and one in 20 will be disabled by it or suffer significant interference in their life as a result.

Chronic pain in children comes from diseases such as arthritis, inflammatory bowel disease, headaches and other sources.

Often medical tests can’t find an organic cause for the pain children are suffering and children may feel like they are not being believed, she says.
“After undergoing many tests that rule out an organic cause parents will be told this is good news but it still leaves the child in pain,” she says.
Certain conditions such as anxiety and depression can open the gate to pain but positive emotions and touch and relaxation and other techniques can help close the gate, she says.
This is the link to the Pain Management Network:

The videos are contained under the heading, For Youth: PainBytes
Mum of 2 kids with Crohn's.
04-26-2014, 08:57 AM   #2
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Twiggy930's Avatar
Join Date: Feb 2012
Location: Canada

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Wow, this looks fantastic. Thanks Dusty!!!
Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-26-2014, 09:28 AM   #3
nogutsnoglory's Avatar
Join Date: Sep 2009
Location: New York

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Breaks my heart but happy to see these resources are being made available.

Crohn's Disease Forum » Parents of Kids with IBD » ACI Pain Management Network website helps youngsters cope
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