through the looking glass, across the Atlantic

i’m a twin. from the beginning we made an unlikely pair – him fair and me dark – mismatched kids who spent most of our first years kitted out in hand-knitted jumpers and shorts and pudding-bowl hair cuts. when we were five, we were both given a pair of red clogs, but stamped our different rhythms up the high street, refusing to be the same child. one day, an elderly woman stopped my mother, ‘oh, the twins – what lovely boys,’ she said, then went on her way. i twisted my heel in the pavement’s grit to grind away the simple affront of being taken for a boy. fraternal twins? don’t be daft. this was 1970, and, as mismatched as we were, she put shorts + short hair together and saw boys.

clichés about twins abound. how could i not grow towards and into the clichés too? we’re not joined at the hip, (cliché alert),  and yet when i look at him, i see myself – some aspect of me, looking back.

if you read the literature around functional abdominal pain, you will soon have a profile of a child – likely a girl – anxious, over-achiever, who (being a girl, note) is likely to catastrophise her pain or explain it in bizarre or emotional terms.  oh these resource-needy, attention-seeking girls, the literature worries.

i look at my daughter and think – is this her?

no. yes. no.

yes, anxious – but anxiety that has come as a result of the pain, not as its precursor.

it is interesting. functional abdominal pain has been described as a waste basket diagnosis. time and again, the literature points to a lack of understanding, the need for more research. i tell you what thrives in this vacuum – clichés.

maybe it’s because i write, or maybe because i’m a twin, but clichés – i can’t be doing with them.

***

quite by chance, and through this blog, i made contact with a woman in the US whose daughter has a similar diagnosis to my daughter’s. both have had abdominal pain since January (January!) that has severely affected their ability to function. schooling, hobbies, normal day-to-day activities such as going out and meeting friends – all disrupted or greatly curtailed.

in many ways, that is where the similarities ended and treatments diverged. in part, this is a reflection on two very different healthcare systems. our daughters have been prescribed different drugs. Citalopram, is used with good effect for children with FAP in the US, and being researched by the Nationwide Children’s Hospital, but is not licenced in the UK for this purpose. Medicines for Children returns no search results. both children are supported by psychotherapy – yet again approaches differ. one child is offered a tailored programme that uses biofeedback with breathing and visualisation exercises, the other child (mine) was offered a generic ‘pain kit’ which was woefully inadequate and has yet to begin any structured therapy. biofeedback will not be used.

today, our girls are going to connect on facetime and work through a visualisation exercise together. my daughter reckons she does not need it, but still wants to do this with her friend. she’s also not certain her pain has gone for good. they know, without having to explain, what the other is going through. it tells me that the child’s experience, their ability to work together as peers, and share and learn through this, is often overlooked as a key factor in helping recovery.

let’s see how it goes. i am quietly optimistic.


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.


i long for the day

i set up this blog just over a fortnight ago. i needed somewhere to place the worries knotted in my head. writing this is not cathartic, but it allows me – line by line – to untangle one worry from another.

the blog also documents my daughter’s recovery. little by little, bit by bit.

i’m not sure i know what ‘recovery’ will be like. will it be as if this never happened? will we be back to where we were before?

so much has gone from her, from this family, from our home. it’s hard to imagine it back.

i long for the day when she will barge out of the house again and my husband will complain that if she carries on banging the door like that, it will fall out of its frame. i long for that day. and for the day when she puts on her roller skates and pirouettes along the corridor. and for the day when she’s out cycling with her friends or trying to catch squirrels with crisps at scout camp.

it’s been three months since diagnosis; that she used to be able to do any of these things seems incredible. it all seems so far away, as if i’m looking back a decade or more – time refracts.

i do believe she will recover. i try not to worry.

my child is incredible.


something from nothing

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.


what is functional abdominal pain?

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.

http://www.patient.co.uk/doctor/recurrent-abdominal-pain-in-children

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.

http://gut.bmj.com/content/45/suppl_2/II43.full

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.

http://en.wikipedia.org/wiki/Chronic_functional_abdominal_pain


one red marble

recurrent abdominal pain is common, representing up to 40% of cases seen in paediatric gastroenterology outpatients. reaching a diagnosis of functional abdominal pain is a process of exclusion. blood, urine and stool sample tests rule out major conditions or diseases. certain conditions progress in certain ways: for example, appendicitis worsens rapidly, and is often accompanied by symptoms in addition to pain. my daughter’s pain is localised in the lower right-hand side of her abdomen and the ultrasound scan she had focused on imaging her appendix and right ovary. the appendix is difficult to image. added to that is the difficulty of imaging a child in pain.

here’s how i feel about my daughter’s diagnosis. imagine i am holding out a handful of blue marbles and one red marble – you can see the red marble easily. if i placed the red marble in a boxful of blue marbles, you’d have to rummage around a bit, but look – there it is after all. but what if i filled a room with blue marbles? where is the red marble now?

all of this is beside the point anyway because you’ve no time to go hunting for marbles. best shut the door to the room and lock it for good measure.

enough talk of marbles for one day, i think.


diagnosis

the story begins where it begins and so it begins here, nearly three months after my eleven-year old daughter became unwell.

unwell? – here i am, one sentence in, and already tripped up by a word i thought i knew and understood. certainly, we thought she was unwell when we drove her to hospital with suspected appendicitis. then her blood and urine tests came back clear, an ultrasound scan was also okay and she was diagnosed with functional abdominal pain. my daughter was discharged into the care of a clinical psychologist who asked her if she is happy at school. yes, happy at school. no follow-up appointment given. paracetamol for pain relief. home again. cope.

unwell, poorly – these are words i have to learn to strike out, because she is neither.

she is in pain – so much pain that she has been unable to return to school since January. she can’t stand up unaided, nor dress herself, nor sleep without crying out – oddly, these things do not mean she is unwell. that she is in pain, a great deal of pain and declining, seems secondary.

we must be reassured by the diagnosis of functional abdominal pain. i am told that parents who are not reassured make things worse. questioning the diagnosis makes worse things worse.

this diagnosis turns a very great deal of what i had thought to be true about care and caring on its head.