two years on

it has been nearly two years since my daughter was knocked off her feet by functional abdominal pain. she was eleven years old and was away from school for six months. she didn’t get occasional tummy aches – she was in almost constant pain, which was worsened by movement. after referral to Great Ormond Street Hospital Pain Control Services, and being prescribed Gabapentin, she made a steady recovery, and returned to school in September 2013.

she had some home schooling while she was away, but really it was very little, and functioned more as means to keep some routine in her life and maintain links with school and friends. we bought her a new laptop. she played minecraft. she played a lot of minecraft, becoming more and more adept. over the past year, and since returning to school, her interest has widened. she’s become a bit of a gamer-girl, happily running her own server, and doing coding to get the game to do what she wants it to.

two years ago we could not believe what was happening to our daughter, or what would become of her. we worried about the time she’d lost – six months seemed to punch a hole in her education. but we needn’t have. she found other things to interest her and made them hers. and, okay, gaming, but she learned too. and today, almost two years after the start of this, she was accepted into a new state-of-the-art university technical college. she took along a page of code she’d written and the Principal interviewing her, beamed.

it is clear measure of how far my daughter has come.

it wasn’t easy, but she made it through on her own terms, and i am very proud of her.

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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.


far from home

we’re over a week into my daughter’s phased return to school – she’s been in school every day between 11 a.m. – 3.10 p.m. she needed to lie-down twice because of tiredness – a side-effect of the hefty dose of Gabapentin she takes each day for pain relief. one teacher noted this might be avoidance behaviour setting in (i’m aware of that, but please give her a chance).

school is where she wants to be. she volunteered to help out with a parents’ evening, giving guided school tours to parents of prospective pupils. she’s doing her best.

what has been clear this week, is that school is not a stress-free experience for her. each lesson is a reminder of how much she has missed, how far the curriculum has moved on from her. it’s bewildering – as if she’s been set down on the far side of town and told to find her own way home.

how did the stress manifest itself? we’ve had tears and shouting and pain – her teeth suddenly hypersensitive, so much so that she could not eat. she saw a dentist. the dentist said her teeth are perfect and the pain is because of a heightened response, i.e. pain hypersensitivity.

stress = pain? or maybe it’s coincidental?

i don’t know.

times like this, it feels we’ve still got a way to go.


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.


holding back?

so much is happening that it is hard to keep up.

my daughter went into school for four days last week – yesterday for three hours. she had a second sleepover away from home last night. she went back to scouts – twice last week. today is annual Feast day, and my daughter will take part in a how to build a huge heavy tent as quick as you can competition. later, a party with friends…

we’re working towards her going away on a five-day school trip in mid-July. she wants to go away to scout camp for a week after that. i’m going to have to say no. her appointment at the pain services clinic in London falls squarely in the middle of that week.

i hate saying no. after five months of her body saying no to her, she does not want/need/accept no in any shape or form. now that the pain has substantially gone, she thinks she’s ‘better’, or at least there’s ‘nothing wrong’.

i wish i knew how Gabapentin works, what it is doing. i should be satisfied that Gabapentin = pain free. what i do know is that last weekend, when one dose was missed and a follow-up dose was late, the pain crept back.

the doctor said that in time the drug should ‘rewire her pain pathways’.

i like to think that is what is happening. it presents me with a reassuring picture of something faulty being fixed; something weakened becoming stronger.

in truth, i have no idea what’s going on. i’m not alone in this.

The effects of long-term (greater than 36 weeks) gabapentin therapy on learning, intelligence, and development in children and adolescents have not been adequately studied. The benefits of prolonged therapy must therefore be weighed against the potential risks of such therapy.

emc+

There is limited evidence to guide management of chronic pain in children, many pharmacological treatments are extrapolated from adult studies, and there are relatively few controlled trials evaluating the safety and efficacy of treatment in paediatric patients….Gabapentin has been reported to improve neuropathic pain in children, but there are no controlled trials and insufficient evidence to guide recommendations for the use of anti-convulsants for paediatric pain.
Pain in children: recent advances and on-going challenges (pdf) British Journal of Anaesthesia, 101 (1): 101–10 (2008)

girl, running

my daughter went to scouts this evening.

because she’s not been for six months, her uniform was crumpled, the woggle missing.

she ironed her shirt, had minor strop about the lost woggle, and dashed out.

she is getting her life back –

a bit sore still –

but coping.

my worries can fix on more mundane things…such as how many trees will she try to climb/fall out of/run into tonight…