Reflex Sympathetic Dystrophy
Can a cure be found for the mysterious illness creating wild and painful movements in 14 year old Jessica's leg. Jessica Grace's illness is a puzzle, no-one at Great Ormond Street has seen anything quite like it before.
It's been diagnosed as a form of Reflex Sympathetic Dystrophy or RSD, a disorder in which abnormal pain messages are sent to the brain. Jessica tells us "I have RSD in my right leg and it's atypical, so it's constantly spasming and shaking".
Jessica's symptoms are completely different from the usual ones. She's being treated by specialist physiotherapist Sue Maillard who explains "What normally happens in RSD is that the body, because it hurts, keeps everything really still, that's the body's normal response to pain. What's happening, in Jessica's case, is the opposite".
The causes of the condition are not fully understood, but the effect is that sufferers experience extreme pain in one of their limbs. There's no obvious physical cause for the pain, and when Jessica is asleep; the shaking stops.
Treatment for regular RSD, involves re-educating the brain to ignore the pain signals, combined with physiotherapy to get limbs moving again. Jessica needs to fight the pain messages and learn to control the movement in her leg. Since she arrived at Great Ormond street, they've been trying to get Jessica used to wearing a sock and tuby grip, to teach her brain to fight through the pain that even such light contact causes.
Sue Maillard is a leading research physiotherapist and has attended many international conferences, but even she has never come across these symptoms before. She's decided to try out something new. Jessica is being given a general anaesthetic, and while she's sedated and her leg is still, they will put a plaster cast on it to see if this will control the movement. Because this case in so unusual, no-one knows whether the plan will work.
The plaster cast will be split and held together with bandages, to facilitate easy removal should she awake in insufferable pain. The symptoms are exceptional and this treatment in an experiment.
Jessica's woken up, her leg is still shaking and she's in agony. Sue knows the pain Jessica is in, but she won't let her give in to it.
Jessica is writhing in Agony
Because Jessica's leg doesn't shake when she's unconscious or asleep, Sue's convinced that if she can fight through the pain it will begin to lessen. It's all about regaining control of the leg. She explains her thinking "There's no physiology causing the shaking in her leg, In fact it more a sort of malfunctioning of her brain that's causing it. She's quite tearful and asking to have that cast removed because the pain's worse, but actually she's coping with the pain much better than she was two weeks ago".
After a few days, Jessica has had a chance to get used to her cast and is ready to undergo some physiotherapy under the supervision of Jesse Cope. Jessica has been confined to her bed for over two weeks, so desperately needs to exercise both legs; with control. Already she's coping much better when her leg is touched and she's now feeling much more positive. Wearing the cast still takes an effort, but the leg settles down quite a lot when it's in the splint.
Jessica will have physiotherapy sessions twice a day. It's going to take a lot of effort to regain control over that leg.
Six days after the cast was put on, Sue Maillard will try something else new. Jessica is put on a tilt-table to help her stand upright for the first time in weeks. Trying to straighten her leg causes acute pain, RSD is is one of the worst pains known to medical science, and Jessica screams in agony.
A month after being admitted, Sue Maillard is certain that Jessica is ready to stand. Her leg only has a slight twitch and she has desensitised herself to the pain. It still takes an enormous effort to overcome the pain sensations that Jessica's brain registers. Jessica manages to take her fist steps with the aid of a walking frame.
After nine weeks as an in-patient and five weeks as an out-patient, Jessica was walking almost normally again. Her perseverance has paid off.
CREDITS: All of this information came from the UK Channel 5 "Child in a Million" documentary series