it feels good/a relief to be writing this.
here we are, facing the year end, the first six months of the year, swallowed. it’s December. it should be July.
since October, my daughter has gradually come off the pain-relieving medication she was prescribed (Amitriptyline, Gabapentin) to control debilitating functional abdominal pain that started in January.
in November, she was discharged from the care of our local hospital. we hope for similar from Great Ormond Street Hospital in the new year.
i’ve learned a lot this year:
1. pain support services for children in the UK are wholly inadequate.
2. paediatric clinical psychology should be offered as an intensive service, so that children can rapidly build effective coping strategies.
3. children in pain can not only gain support from, but can give support to, other children coping with pain.
4. paediatric pain is not fully understood. we were told no painkiller would help, most didn’t. Gabapentin did. every child is different, we seemed to be offered generic advice.
there’s nothing more stressful, i think, than trying to cope with a child’s pain.
it has been a hard year and i am extraordinarily proud of my daughter.
it has changed her. it has changed me.
my daughter is back in school for a second visit – we are aiming for an hour today. she was in worse pain when she woke this morning. by the time we left the house, dosed up on paracetamol and ibuprofen, she was in brighter spirits and clearly looking forward to seeing her friends again.
the morning encapsulates for me the uncertainty that exists at the heart of the diagnosis. is the fact the she’s in more pain this morning – the day she is due in school – a coincidence, or evidence of some deep-seated anxiety that she may not be aware of? we know that anxiety triggers pain, but how is it possible to differentiate between co-incidence and causality in the absence of an anxious child?
perhaps it is not helpful/useful to think too closely about this. but I can tell you, it is a question that drives me quietly mad.
Functional abdominal pain, (FAP), is sometimes described as a wastebasket diagnosis. the diagnosis is great at telling you what is is not, but thereafter the detail is as grey and muddy as an abdominal ultrasound scan.
i remain deeply dissatisfied with the level of care offered to my daughter after she was discharged from hospital in February. ‘team’ management has meant in practice that no one person has taken charge of her care beyond diagnosis. advice on medication, and a prescription for amitriptyline, came from a paediatrician at another hospital. we have had to push and push to get any guidance on pain management. most recently, my daughter’s care has been bounced back to our family doctor, who admits she is no specialist in abdominal pain.
we can argue over the extent to which FAP is a wastebasket diagnosis – in many ways that is by the by. what our experience shows, unequivocally, is that this is the basket into which a child with FAP often gets thrown.
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?
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:
…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
three months in, and what can i tell you about functional abdominal pain?
the diagnosis rules out appendicitis, Crohn’s, colitis, or an infection.
that’s what i understand when i am told there is nothing wrong. that nothing can be found.
it places me in a position of having to believe that something – i.e. my daughter’s pain – can come from nothing.
seeing as you already know about my fears, you may as well know that i was kicked out of physics in school – you’d struggle to find a less able mathematician than me. and yet, via twitter, and my research into some writing, i came across Lawrence Krauss, and his thinking around how something can come from nothing.
i don’t need to be able to understand the maths to imagine a flat universe.
maybe when it comes to understanding functional pain, i need to do the same. engage my brain on some other level. then, perhaps, i will be able to accept that sometimes pain just happens.
that something can indeed come from nothing.
Lawrence Krauss presents ‘Something from Nothing and the Magic of Reality’ 12th April 2012.
i remember the weariness on the paediatric gastroenterologist’s face when he diagnosed my daughter. she was admitted to hospital with suspected appendicitis. she had routine blood and urine tests and an ultrasound scan which looked for her appendix and checked her right ovary. a stool sample was tested (faecal calprotectin) and was within normal limits. these are tests to exclude infectious or inflammatory diseases. the consultant acknowledged my daughter was in pain, and that her pain was real, then said, ‘We cannot find anything that is causing the pain. We think the pain is functional in nature.’
functional? what on earth did that mean? i remember distinctly the exasperation and disbelief – and looking from him to my daughter, who was curled up in tears – how could there not be a cause for the pain? it made no sense.
what i didn’t know then, but do now know, is that functional abdominal pain is relatively common, affecting up to 15% of school children. it affects girls more than boys, and peaks during late childhood, early adolescence. my daughter’s experience of FAP is not typical. she is disabled by pain, yet the frequency and severity of her symptoms, the fact that the pain remains localised in the lower right-hand side of her abdomen, all these things made no difference to the diagnosis. if there is a spectrum of FAP, it seems not to matter. my daughter was discharged after a brief meeting with the team clinical psychologist, and no follow-up appointment with gastroenterology offered.
i have the distinct impression that Paediatric Gastroenterolgy is tired of FAP, wearied by it and the drain it has on resources, and is to a very large extent intolerant of parents who ‘don’t get it’. parents who don’t get it are rapidly labeled as part of the problem – which is a neatly invidious position to be placed in.
so what is functional abdominal pain?
No evidence of an inflammatory, anatomical, metabolic, or neoplastic process that explains symptoms. Criteria fulfilled at least once a week for at least two months – must include all of the following:
- Episodic or continuous abdominal pain.
- Insufficient criteria for other functional gastrointestinal disorders.
Functional abdominal pain describes continuous, nearly continuous, or frequently recurrent pain localized in the abdomen but poorly related to gut function.
Functional abdominal pain is divided into two categories.
Functional abdominal pain syndrome (FAPS), also called “chronic idiopathic abdominal pain” or “chronic functional abdominal pain,” describes pain for at least six months that is poorly related to gut function and is associated with some loss of daily activities.
Unspecified functional abdominal pain is functional abdominal pain which fails to meet criteria for FAPS.
Chronic functional abdominal pain (CFAP) is the ongoing presence of abdominal pain for which there is no known medical explanation. CFAP is characterized by chronic pain, with no physical explanation or findings (no structural, infectious, or mechanical causes can be found). It is theorized that CFAP is a disorder of the nervous system where normal nociceptive nerve impulses are amplified “like a stereo system turned up too loud” resulting in pain. Alternately it is hypothesized that there exists in the intestine a protozoan (namely blastocystis) which is interacting with the sympathetic nervous system and causing the pain.