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.


who cares?

my daughter has been in near constant pain since January – pain that woke her night, that remained localised near her appendix; pain that was worsened by movement and meant she could not sit up or stand up without help. she was diagnosed as likely having functional abdominal pain in February.

in March, perhaps the most stressful point in all of this, i took a call from an associate member of the gastro team who told me:

1) gastroenterology could do nothing for my daughter – the pain was functional, nothing was wrong;

2) the hospital psychology team were available to work with us if we wanted them to;

3) they could refer my daughter as an in-patient to a centre where pain was treated as secondary to emotional or physical abuse.

i was shaking after the call ended. i had tried to get advice on pain management from the gastro team – referral to a pain clinic, a TENs machine – anything that would help my daughter cope. but nothing – NOTHING – was forthcoming. this was bad enough, but then for it to be inferred that her pain was secondary to emotional or physical abuse was dreadful. it felt as if we were being sucked into some Kafkaesque nightmare.

my daughter was discharged from hospital with no other pain medication than paracetamol and ibuprofen; no follow-up appointment with the gastro team was offered. any interest in her on-going condition stopped at the point of discharge. we were dropped. we went back to our GP. she said she was not an expert in abdominal issues and referred us back to the gastro team. the gastro team refused to engage further, even though they had acknowledged that my daughter’s pain was severe. they went on to say that they would not support referral if we wanted a second opinion.

i think the term is stonewalled. the weeks went by and the weeks by and my daughter’s condition did not improve.

then, towards the end of March, my daughter was seen by a rheumatologist for a completely unrelated issue – this takes the form of a low-key annual review in Norwich. my daughter has hypermobility, and has been treated in the past for complex regional pain syndrome after a bad fall in a roller hockey tournament. the rheumatologist said she sees a lot of hypermobile children who have painful episodes; hypermobile children can be more sensitive to pain. she thought the abdominal pain was likely neuropathic, but that she was no expert in abdominal issues, and said the gastro team were best for that. she prescribed Amitriptyline as a muscle relaxant and to help ease the pain.

the rheumatologist called again last week and offered my daughter an appointment first thing in the morning if we could get to Norwich. we were there with time to spare.

she prescribed Gabapentin – and since then, my daughter has been completely transformed; it is as if something has switched inside her. she is not pain-free, but the pain is greatly reduced.

i am frankly very dissatisfied with the care provided to my daughter at our local hospital – that the gastro team could not, in fact did not, advise on pain relief beggars belief. they are the experts in abdominal pain. they see it time and time and time again. not intervening consigns these children to months of unnecessary pain.

i do not think this is acceptable.

i think it was my daughter’s very great misfortune not to have been seen in Norwich from the outset.


life, death, hamsters

my daughter’s pet hamster died last week. not even an emergency dash to the vet could save it.

and although the vet said don’t give up hope, the hamster is now buried in the garden and planted over with anemones.

maybe this is simplistic, but functional abdominal pain is often associated with anxiety, grief. distress – all these things can worsen the pain.

my daughter was very upset at losing her hamster, but there was no sudden clutching of her stomach, no worsening of symptoms. if anything, she’s been brighter these past few days.

i’ve written elsewhere of equations that don’t balance.

but hey. life goes on. we have two new tiny hamsters – parsley and sprout – and they are a treat. these are not they, but are almost as cute:

i’ve said it before – hamsters should be available on the NHS.


where are we at? where are we going?

i started this blog four weeks ago.

since then, my daughter has been to school twice. she’s on her feet each day for a short walk. she’s eating one or two meals daily at the table. that’s progress.

she has gone from taking 10mg amitriptyline to 20mg to 30mg (with option of upping to 40mg). her mood is brighter. she’s got her chatter back.

she’s in worse pain in the morning and in the evening. her pain is managed with paracetamol (1000mg three times daily), ibuprofen, and tramadol as needed.

we’ve had two meetings with the psychotherapist, one with an anaethetist. we are progressing with psychotherapy, all other care goes back to our GP.

we have referrals in place to the pain clinic at Great Ormond Street hospital, for paediatric physio, and for occupational therapy.

we face the fourth month of this with the realisation that any improvement in her condition is slow, but hopefully incremental.

i have to suspend my disbelief. at the moment, function = pain, yet we are told that a return to function = pain will go away (one day).

just not any day soon though, that’s clear.


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)


in-dependency

there was talk this week of needing to push through pain barriers. pain behaviour, boundary setting – tenuous terms that sat there, elbows out, in the discussion.

poke.

my husband and i came home from the second meeting with the hospital psychotherapist – shattered, relieved, troubled, wary. we talked. disagreed. argued. made up.

at the heart of this very difficult situation is something we both want dearly and need now to make happen. our daughter has to be able to stand up again without our help. if she could do this, it would break the seemingly vicious circle of dependency she has on us.

a friend called this morning and suggested occupational therapy.

of course.

the NHS has guidance on How to Access Occupational Therapy. they assess needs, provide advice on equipment to improve mobility, and will work with the affected person to help them recover their independence.

it is a moot point as to why the clinical psychology team did not suggest this.

coordinated, joined-up care? the hospital can’t provide that.

it is up to us, my husband and i, to make it happen.

patchwork. piecemeal. here, there, everywhere.

– is this the state of the NHS in the 21stC? or had i set my expectations too high?


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.