some of the things that have been said…

‘we know the pain your daughter feels is real’

‘the pain is not in her head, it’s real’

‘there’s nothing wrong’

‘we don’t know why, but sometimes the body’s pain signals get turned up high, like the dial on a radio set to full volume’

‘i don’t like the distinction between functional and organic. there’s always a reason for pain’

‘anxiety worsens the pain’

‘are you worried about anything?’

‘returning to function makes the pain go away’

‘pain killers, in cases like these, don’t work’ (in my daughter’s case this is not true, pain killers most definitely help, but paracetamol and ibuprofen are sometimes insufficient)

‘giving attention to the pain makes it worse’

‘the gastro team can’t do anything more’

‘don’t question, it makes things worse’

‘we don’t have the resources here to answer your questions’

‘we will not support referral for further investigation’

‘she needs to live with the pain’

‘hypermobility has got nothing to do with it’ (without assessing my daughter)

‘even if her hypermobility was causing some dismotility [of the gut], we couldn’t do anything about it’

‘complex cases such as your daughter’s often fall between two stools’ (when i complained that we were being bounced backwards and forwards between the gastro team and our GP, while trying desperately to get advice on pain management)

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circles of the mind

Ouroboros

i’m still trying to get my head straight after yesterday.

my daughter returned to school, her first visit since January. even a week ago, i was unsure whether this was going to be possible. we arrived when the other children were in class, and she spent half an hour with her home tutor looking at an exhibition about Anne Frank in the school library. we’d spent time the day before looking at online resources from the Anne Frank House museum, to help place the school visit in her mind.

my daughter has also had the support of a new friend, who suffers from chronic abdominal pain too – a girl who has already faced up to the experience of returning to school. she was able to say to my daughter that, yes, it was tough, but it was fun too. what had once seemed impossible for her, was possible. she’d managed it, and so too could my daughter.

whilst my daughter visited the exhibition, i spoke with her Head of Year, and we made plans – loose, flexible plans, to try and accommodate her return. another visit to school next week, this time to include meeting her school friends.

then, from there, we went to the hospital to meet with two clinical psychologists.

my daughter met with a psychologist separately. they discussed all she has achieved and used that as a basis to set new goals – eating breakfast at the table every day (she will be allowed to lie down after five minutes if necessary); agreeing what she could do to dress herself, continuing to go on short walks.

in the room next door, we talked about the limits of the gastroenterology service, whose remit it is now clear extends no further than diagnosis. they will approve a referral to Great Ormond Street Hospital Pain Service Clinic. pharmacological decisions become the responsibility of our family GP. clinical psychology support/therapy remains with the hospital.

any remaining expectations we had of coordinated, joined-up care were absolutely dashed.

we spoke at length about pain behaviour – pain the bully; pain the piper that makes the whole family dance its tune.

what emerged from the discussion is the importance of not falling, unwittingly, into patterns of caring that reinforce dependency. it took a little while for the implications of what was being said to become clear. it’s very very difficult as a mother to step back, to step away from a child in pain. what crushes me at times is this absolute sense of being locked into a situation we cannot break out of. i know my daughter needs to do more for herself. the more she is able to do for herself, the more likely she will be able to cope. from that comes control, and the ability to push the pain further and further away from herself. it does not mean she will be pain free. it means the pain will no longer be in control of her.

well, at least that is what we were told. at times i felt as if i was being read to from a textbook. presented with an equation that always balances.

and yet there are limits. my daughter cannot get out of bed, she needs help standing up from sitting down. she cannot sit up from lying down in the bath. if she had a hoist, maybe she would be able to pull herself up. but where on earth do we get a hoist?

chronic, debiltating pain reminds me of the Ouroboros, the mythical creature locked in an endless cycle of consuming itself.

here is a striking modern interpretation:

Image: Andy Thompson Art

i look at this image and it makes me think. i need to do all that i can to help my daughter bring her pain under control, but i need also to be sure that the care i provide does not perpetuate a cycle of dependency. the whole family, her friends, herself – all of us need to be part of breaking the seemingly endless cycle that chronic pain presents.

but i cannot stand by as my daughter struggles to get out of bed. there are limits. she is my daughter. i am her mother. the relationship is inevitably one of dependency too.


the simple story of a bookmark list

i started off this post wanting to discuss an article – a piece of research from The Royal Alexandra Children’s Hospital in Brighton – that looked at a number of children with chronic abdominal pain, localised in lower right-hand quarter of the abdomen. appendicitis had been ruled out in these children, (as with my daughter), but they continued to have disabling pain for months, sometimes years after that. the hospital decided these children should be offered an appendectomy after all – and, in something like 80-90% of cases, the pain resolved post operation.**

can i find this piece of research now?

no.

my firefox bookmarks are in one long, jumbled list.

looking through my bookmarks makes salutary reading. they go from listing things such as How to Cook the Perfect Yule Log, The Universal Language of Lullabies, Descartes and Cartesian Coordinates, and Did Manet Have a Secret Son? to bookmarks almost entirely focused on pain – causes of pain, types of pain, pain relief, therapy. from the third week of January, any preoccupation with cookery or Descartes or art or music ends. it’s all set out in one simple, stark list:

Recurrent abdominal pain in children

Mesenteric Adenitis

Action on Pain

Joint Hypermobility and Functional Bowel Disorders

Torsion of parietal-peritoneal fat mimicking acute appendicitis: a case report

Joint Hypermobility Syndrome Pain

Visceral Pain (Organ Pain) vs Parietal Pain, Somatic Pain, Causes

…i could go on…but i won’t.

**i found the article, published in 2010: Diagnostic Laparoscopy and Appendicectomy for Children with Chronic Right Iliac Fossa Pain – An Aggregate Analysis – ‘Symptomatic improvement can be expected to be 88% immediately and up to 100% in the long term.’ published by the Journal of Paediatric Surgical Specialities


4.30 a.m. red flags

it was after 11 p.m. before my daughter fell asleep last night.

she gets spasms of pain that jolt her awake. she’s had a number of bad evenings in the past week, the pain tipping her from sleep.

i remember after she was born, waking before she did in the night. i used to think it funny – a kind of trip wire. maybe that’s hardwired into me now.

it’s times like this when, cupped in silence, i find it hard to square my daughter’s symptoms with the diagnosis.

Determining whether CAP [Chronic Abdominal Pain] is physiologic or functional can be difficult. Although the presence of red flag findings indicates a high likelihood of a physiologic cause, their absence does not rule it out. Other hints are that physiologic causes usually cause pain that is well localized, especially to areas other than the periumbilical region. Pain that wakes the patient is usually physiologic.

The Merck Manual: Chronic and Recurrent Abdominal Pain

other red flags include: persistent pain that is localised in the lower right-hand quadrant and pain that is worsened by movement.

this characterises my daughter’s pain exactly, yet no-one has assessed how movement worsens her pain.

what’s our experience? once placed in the FAP box, it’s very difficult impossible to get out. it’s a deep, deep box. you have to haul your red flags a very long way before anyone will notice they are flying.