eat, sleep, live

this evening, my daughter is going for a sleepover with a friend. a week ago, this would not have been possible.

should she go? every small twinge of pain she has and worry flares again – bright as ever. what if the Gabapentin fails spectacularly, suddenly…?

what if?

what if?

what if?

what if all of this is too good to be true?

i have to switch my head off. she has to go.

months of chronic pain have changed our lives. i wasn’t aware of it to begin with, but pain changes so much – it makes you wary and worried; it refuses to be defined or answer the questions you have of it. it confines, building a kind of structure around the family that has hardened over time.

it’s time to chisel our way out.

my daughter will go for a sleepover and my husband and i will go out for an early evening meal. we can get back easily, if we need to. it will be our first night out together since last year.

i’m sure my daughter will be fine – Gabapentin will at least ensure she gets some sleep.


whatever the day brings

today, i felt it. as if someone was pushing on my throat.

my daughter goes back to school tomorrow for an hour, her first visit since January. she wants to go back, but she’s worried about what the other children will think of her. when i told her that it’s only an hour, and that the other children will be class, she burst into tears.

‘You don’t understand!’

after school, we have an appointment at the hospital to review progress. we’ve been asked to write some notes on goals, including any issues we’re struggling with.

so i’ve made notes. listed goals and issues, and sent them on, in advance.

i’m not going to think about what tomorrow will bring. i could imagine it any one of thirty forty fifty different ways.

i’ll deal with it as it comes.

but i know that feeling, the feeling of pressure at my throat –

stress.


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.


the new normal

2013-04-19


there’s nothing wrong…

it’s been nearly three months since my daughter became unwell started with this painful episode.

it was a snow day, school was cancelled, and she had been out playing with her friends. she gradually started feeling unwell – a tummy bug, i thought – but had no temperature and was not sick. after a day or so, the pain started, then worsened, and hasn’t gone away since.

i feel brow-beaten at times by the repeated assertion that there’s nothing wrong.

yes, it is important to be reassured. yes, the success of any follow-up psychotherapy relies on parental acceptance of the diagnosis. i know that.

at a consultation this week, the clinical psychologist took hold of my daughter’s hand and said, ‘There’s nothing wrong…’

i am sure she meant this in the kindest, most reassuring way.

but it is bewildering. what message does that give my daughter, who is in near continuous pain? how does she square ‘nothing wrong’ with what she feels?

and now i regret not saying, actually, there is something wrong – my daughter is in pain. the pain is disabling. it prevents her from living her life as she wants to.

it would have been more accurate if the clinical psychologist had said we don’t know what’s causing the pain.

i think it is more than an issue of semantics: nothing wrong speaks of certainty; we don’t know does not.


mind the gap – NHS pain management services for children

we met with a senior clinical psychologist on Wednesday to discuss what next for my daughter.

we did our best to differentiate between being reassured and being worried. that is, being reassured that the tests she has had (see category on diagnosis) have found no underlying ‘organic‘ cause for her pain, but worried that the pain is on-going and disabling. we agreed, again, that better pain management is a priority.

i was woken at 4 a.m. by my daughter crying out in pain in her sleep. she is unable to get out of bed, or sit up, or stand up without help. all of these things cause her to cry out in pain. paracetamol and ibuprofen help, but are insufficient.

the hospital where my daughter is being reviewed has no specialist pain service for children – the pain clinic only treats adults.

it gets worse.

it seems there are no specialist pain services for children in the whole of the eastern region of the UK. The British Pain Society maintains a list of paediatric pain services and clinics in the UK (pdf file). Great Ormond Street Hospital Pain Control Services is the nearest – though quite how anyone gets a child from the East in debilitating pain into central London to access the service is anyone’s guess. pain services across the UK are under pressure because of NHS reorganisation and funding cuts. Dr Rajesh Munglani reported on the impact of NHS reforms in Pain News Summer 2012 (Vol 10, Issue 2).

in the short-term, this is how it works. it’s Friday. sometime today, i will get a call from a consultant who has an interest in paediatric pain relief. he will see my daughter on Monday. we don’t know when, only that he is in surgery for most of the day (it is his job after all). he will make time to see her. it’s a huge relief to know that advice is within reach.

but is this how pain services for children at one of the UK’s leading hospitals should work?

mind the gap, kids.


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.