Children’s Mercy Hospital offers hope for teens with mysterious, excruciating pain
From a very interesting article that appeared on December 13 2013:
One moment, Albiera Camaiora — Albi — is a stellar free-diver, a 13-year-old from Lima, Peru, with the lung capacity to hold her breath for more than two minutes and the daring to plunge deep beneath the ocean surface, up to 70 feet, unaided by scuba gear.
“One day, she falls down in the shower,” her mother, Claudia Calderon, explains at Children’s Mercy Hospital.
The injury is nothing, a trifling hip bruise.
But soon after, while on a skiing trip to Colorado, Albi is struck by crushing headaches from the back of her neck to her eyebrows. Her father and mother think it is the altitude, or maybe a sinus infection, until the pain spreads to her shoulders and back. On the return flight to Peru, it grows worse.
“That’s when we start a nightmare,” her mother says.
Over the next weeks and months, Albi sees more than 40 physicians from around the world — neurologists, cardiologists, rheumatologists, psychologists, psychiatrists, orthopedists, endocrinologists, experts in tropical diseases. They draw blood and analyze urine. They give her X-rays and MRIs. They prescribe pain pills. They can find nothing medically wrong.
By the time she flies in August to a children’s hospital in Miami, the pain has spread to her entire body. Unable to walk without horrendous difficulty, she uses a wheelchair. She can’t lift her arms. Her mother must spoon-feed her and brush her teeth. Touching her skin sends her into excruciating paroxysms.
Albi is incapacitated.
“We are desperate. We are afraid,” her mother says. “… You stay awake at night. You don’t know what’s going on. It’s horrible.”
Then comes a call from a relative, a journalist in Los Angeles who has heard of a handful of children’s hospitals nationwide that see kids with symptoms like Albi’s. Within a day, in mid-September, the seventh-grader and her parents are on a plane to Kansas City.
“As of today, we are done with the wheelchair,” rheumatologist Cara Hoffart, 34, tells the family at Children’s Mercy.
“Get up. Put it aside. Walk.”
“As of today, we are done with the medications.”
Hoffart knows what is wrong.
I’d never heard of the diagnosis “Amplified Musculoskeletal Pain Syndrome” before, from the description above it sounds quite horrible.
From the interviews and explanations in the article, you can pick out a lot of the real nasties of severe and chronic pain; allodynia, hyperalgesia, central sensitisation, neuroimmune and HPA axis activation. There is also the broader psychosocial impacts not only on the sufferers, but also their families.
There are positives here – the children are doing well with treatment it seems.
But I can’t help but feel that there is something missing. Amongst all the intensive physiotherapy, painful exercise sessions, desensitisation approaches and psychological counselling, education is not mentioned, not at all, not even once.
This might be result of the reporting, maybe it was mentioned but ‘The Kansas City Star’ reporter didn’t think it was important?
Maybe its just not part of the program?
The following quote stood out for me:
“If it hurts to do something, that’s what we tell them you should do,” Hoffart said, which is one of the prime reasons they tell kids on day one to get up from their wheelchairs.
Could some pain science education help here? Perhaps a few minutes on the “Drug Cabinet in the Brain“, or an appropriate explanation of the immune system and cytokines in pain; a bit on immune buffering behaviours?
An explanation, or two, about smudgy brain maps, disinhibited neurotags and spreading pain? Maybe a bit of education for mum, dad and the rest of the family too?
Why would anyone be surprised that education was not offered as an intervention. How can you teach something, if you don’t know it yourself? I am often appalled at how little, authorities in the area of pain really know about pain. This says nothing about their abilities to apply the physiological knowledge that they possess to an actual clinical setting.
As someone who gave up the intervention of “desensitization” in the treatment of allodynia and cutaneous hypersensitivity decades ago because I considered it a barbarous torture whose outcomes produced mental scars not only on patients but on the provider, I find that the conceptual model of ” we got to make it worse so that you can get better” interventions worthy of Guantanamo and not civilized health care without adequate education and patient understanding and full acceptance of the process. Do I do some of the same processes now that I did then? Yes. Repeated application of stimuli, even noxious ones, are an important element in neural organization and reorganization. Without an understanding of the processes involved and without the cognitive and emotional commitments that come from that knowledge, how can a patient, parent, or committed health care provider cause discomfort to themselves, a loved one, or another in their care on the “chance” that this will help? I used to get really angry at physicians who would flippantly order “rigorous desensitization” with never having performed it on a regular basis to themselves or another.
Are there elements of neural system challenge in GMI, sensory discrimination, or general interventions to recover function in the care of the patient with persistent pain? Absolutely! I do not have the statistics to say that my patients get better more efficaciously with the more humane approach of GMI. But I know I sleep better and I have had more than one parent of a child with persistent pain tell me that they sleep better having the knowledge that a pain education program provides them as we all work that child or loved one work through the treatment process. My mirror neurons are active when I treat one of my patients. My mirror neurons are very active when it comes to anything involving the activities of my children. Without the knowledge creating the “why’s” and “how’s”, of my actions and observations, it would difficult for me to remain a pain practioner and parent.
Thanks for your thoughts and comments. I guess, sadly, I’m not surprised and I have had experiences that mirror some of your own in regards to requests for “desensitisation”.
Borrowing some well worn phrases, I often reflect that the difference between “No pain, no gain” with its likely flare-ups and boom and bust cycles, and the carefully graded “you can be sore, but you can be safe” approach to “getting in under the radar” is education; its “Know pain, know gain”.
I’ve seen many people in trouble that have been told about pacing and graded exposure/activity but they’ve got nothing to “hang it on”; no framework or schema to really understand why or how. Neuroscience education provides this and I’ve often had patients say “Aha! Now I get what my other physios, doctors etc, were trying to tell me”.
I like the idea of GMI as humane. I also think that with its essential emphasis on education its also humanistic (in the philosophical meaning) in the sense of emphasising the value and agency of another human being – it requires a depth of interaction with another person, as opposed to the meat tenderising approach of desensitisation.
I love this line :- it requires a depth of interaction with another person, as opposed to the meat tenderising approach of desensitisation.
Thanks Tim x