the year, ending

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.

that’s it.

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.


was it really necessary?

three weeks ago, and more than four months into a period of unprecedented and debilitating abdominal pain, my daughter was prescribed Gabapentin* – within a week, her pain had substantially gone. since then, she has returned to school on a part-time basis, has taken part in a tent-building competition with Scouts; she’s ridden her bicycle; she’s put on her roller skates and skated around as if she had never taken them off her feet.

at an appointment in March, one consultant told me that pain relief ‘in cases such as these’ does not work and might even make a bad situation worse, resulting in ‘narcotic bowel‘. another consultant prescribed Tramadol. it did not work, but Paracetamol and Ibuprofen did – up to a point. at six hourly intervals, i had an image of my daughter’s bowel dissolving into toxic gloop.

week followed miserable week, months went by. we had to learn somehow to be reassured. it was difficult to be reassured by what i was told to believe (which required me to suspend my disbelief). in the end, i was reassured by the simple fact that my daughter continued to eat. we set goals, small, seemingly impossible goals – and notched them up: evidence of her recovery. but goal-setting only took us so far, and at a painfully slow rate. Gabapentin has somehow enabled my daughter to fast-forward – what would likely have taken months, was accomplished in a matter of days. it’s leap-frogged the need for the clinical psychologist’s programme, using visualisation as a tool to push the pain away – a programme that has only just started anyway. we’ve had to reconfigure that as a strategy to help her cope with stressful times.

so, here we are. i ask my daughter if the pain has gone from the place around her appendix – even the gentlest touch there would make her recoil. she pokes her tummy and beams ‘yep, fine!’.

throughout these past five months, my daughter’s pain refused to fit neatly into the Rome Criteria that classifies functional gastrointestinal disorders – her pain was localised, worsened by movement, and disabling – she could not sit up, stand up, or get out of bed unaided; she could not dress herself. she missed months of school. her recovery – physical and psychological – will take time; at school yesterday she had to go and lie down.

one of the functions of this blog is to try to pull together resources and materials to help make sense of a fundamentally difficult and elusive diagnosis. look to the right and scroll down and you’ll find a links on visceral hyperalgesia and pain hypersensitivity. there’s a lot to take in. 

if it is acknowledged that some people have pain hypersensitivity, then why not explore/suggest wider treatment options? perhaps my daughter should have been prescribed Gabapentin at an earlier stage? i know psychotherapy helps, but months of misery generate problems of their own – maybe this could have been avoided?

i don’t know – it takes as long as it takes and that’s all there is to it. time.

my daughter’s experience points to a need to understand the complexity of each individual case. until that happens, pain is both a necessary and unavoidable outcome of a system that offers psychotherapy alone as the mainstay of its toolkit  – how could it be otherwise?

* — it is notable that the prescription for Gabapentin was made by a paediatric rheumatologist seeing my daughter on an unrelated matter, and not one of the gastro team who had evaluated my daughter in January and then handed her case over to clinical psychology.


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.


becoming pain literate

although my daughter’s pain has dominated our lives for more than three months, the whys or wherefores of it have not been discussed in detail. the pain has been described as being like the volume control on a radio being stuck on high, or a pain gate left open that won’t shut.

i try my best to be reassured – that’s a big ask when i don’t really understand what this pain actually is.

i’m pain illiterate, but i’m trying my best to understand.

pain can be visceral, parietal or referred. it can be somatic or neuropathic.

in an interesting podcast for the Medical Journal of Australia, Professor Jürgen Sandkühler, Head of the Centre for Brain Research at the University of Vienna, discusses the neurophysiological differences between acute and chronic pain. he describes chronic pain as a ‘disordered system of pain perception, where the pain has no functional meaning’ and goes on to discuss neuronal responses in spinal cord pathways associated with chronic pain. he describes how chronic pain causes changes that become a ‘memory trace of painful stimulus’. over time, chronic pain results in maladaptive behaviour of the nervous system. in the long-term, physiological changes mean that a relatively low stimulus will trigger a strong pain response, otherwise known as hyperalgesia.

okay. got that. i think.

but, just as i think i’ve got my head around hyperalgesia, i find its siamese twin: allodynia. i’ll leave you to ponder the differences.

it seems clear that chronic pain begets pain, and that is a bleak prognosis. yet, in an accompanying article to Sandkühler’s MJA podcast, Neuroplasticity and pain: what does it all mean? Philip Sidall suggests there is cause for hope:

The first reason is that, although it may sound strange, neuroplasticity is by nature plastic. This means that although nervous system changes can occur, they are not necessarily irreversible…The other reason for hope is that the findings provide us with a much better understanding of the role of psychological factors in pain and the potential for treatment. There is no room for the old dualist view of pain being either real or psychological. Cognitive and emotional processes strongly engage brain and spinal cord pathways that are directly involved in altering the responsiveness of pain pathways. By doing so, psychological factors influence neuroplastic processes and thus directly modify the pain experience.

that’s timely. tomorrow we have a third meeting with the psychotherapist supporting my daughter.

The British Pain Society has published a useful guide on Understanding and Managing Pain (pdf). Pain Concern provides information on a number of painful conditions, and advice and guidance on living with pain.


the scale of nothing at all

i find i am going in circles.

i’m not only thinking circular thoughts, but each day pretty much delivers me back to where i set out – a child who wakes in pain, manages to a greater or lesser extent, and is in worse pain again by the end of the day.

we have our third psychotherapy meeting later this week. maybe it is time to try and straighten the path, to understand where we are headed. what is planned? how will psychotherapy help?

so much tiptoes around the edge and is left unsaid. what assumptions are we working with? an anxious child?

we went out last night for a bar snack in Wicken.

my daughter ate at the table. she coped. afterwards, we crossed the road and went to look at the windmill.

Wicken Windmill

we made a short film, to send to a friend. and, because it was not clear, my daughter stood at the foot of the windmill to show the scale of it.

i looked at the clip once we were home. there’s my daughter – dressed in baggy, comfortable clothes (the only clothes she can bear wearing) – clutching her tummy. there’s a moment, towards the end, when she walks back towards me. she is unsmiling, unaware she is being filmed. her face is pulled down with pain.

we took her out for a meal because it is her birthday tomorrow. but whose interest were we serving? hers? ours? it was, ultimately, an unrelaxed time. i was conscious all the time of the need to get her (&, frankly, the whole family) through it. it was clear that she would rather have been at home, where she is comfortable, than being made to sit upright at a table and eat an over-priced plate of ham and chips.

she did her best.

by insisting that we go out, what did i hope to achieve? some blithe reassurance that she is getting better improving? that we have made a tiny step back towards being normal? have we?

circles. circles. circles. how can i know the scale of anything when the path curves towards me so tightly?


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.