Charles and Denise
My daughter Denise, who has intellectual disability, was 37 years old and living at home when she started to complain of pain in her pelvis. We have always been vigilant about our daughter’s health. She has epilepsy and bi-polar disorder but at the time she was in good health.
Denise has never been very steady on her feet, so we wondered if she had had a fall at her day program. When we realised she couldn’t walk, we took her to the local hospital. I had to carry her to the car and at the hospital she needed a wheelchair.
After waiting for hours, the doctor on duty hardly examined her and said that she was making it up because of her disability. He sent us home and said to go to our GP if she didn’t improve.
When I got home, my son said, “There is something wrong with her”. We took her to the GP who said we must take her back to the hospital. Denise was pointing to her pelvis area and saying ‘sore’. Again we waited for a long time and no one seemed to be making a decision. My son insisted that she be taken for an X-ray.
I’m glad he was with me because he was calm and I was feeling desperate and couldn’t believe that the most fundamental tests were not being done.
When they got the result of the X-ray, the doctor (a different doctor this time) was astounded because there was a fracture in her pelvis that was so obvious. He said, in disbelief, “You were sent home?”
Two months later, she was in pain again and they found another fracture. With complete rest Denise recovered well. We still didn’t know how these fractures occurred.
Soon after, we took her to a routine appointment at the Developmental Disability Clinic in Ryde. Dr Helen Beange knew immediately that the epilepsy medication can increase the risk of osteoporosis, which was the likely cause of the fractures. She ordered a bone density scan which showed Denise had severe osteoporosis and she is now on medication to treat this. If it wasn’t for the Clinic at Ryde and doctors such as Helen Beange and Jane Law, my daughter would not be enjoying the healthy life that she is now. We have a great GP but he didn’t recognise the osteoporosis. The doctors at the clinic include the families and ask them to describe symptoms.
When I think about that first emergency department doctor who ignored our concerns and sent us home, I realise just how important it is for families to question the doctors. I’m not saying to question their credibility or integrity but to question their experience and to really find out how much they understand about our children’s health issues.
Denise is now 45 years old and lives happily in a group home with 3 other women.
Charles (surname withheld for privacy reasons)
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