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.

Advertisements

Gabapentin

my daughter was prescribed Gabapentin yesterday, and this, together with Amitriptyline, will form the main pharmacological treatment for managing her abdominal pain until she is reviewed by the Pain Control Service at Great Ormond Street Hospital. it means that, in time, she should be able to stop taking paracetamol, ibuprofen and tramadol.

the dose starts at 1 x 100mg tablet on day one; 2 x 100mg tablets, day two; 3 x 100mg tablets, day three, and rises to 3 x 200mg daily thereafter, if she can tolerate it.*

she will be reviewed in two months’ time.

today is day two. within an hour of taking a tablet this morning, she was asleep again. drowsiness is a feature of this medicine, though i’m told she ‘should get used to it’.

drowsiness is not the only possible side-effect:

Gabapentin: possible side effects in children

Gabapentin: possible side effects in children

we place huge trust in the doctors, physicians, clinicians who assess and treat our children. drugs are evaluated, discussed, prescribed. i left the consultation yesterday clutching yet another prescription for my daughter, trying my best to balance the potential side-effects with its pain-relief benefits.

the Medicines for Children web site provides clear guidance to parents on a range of prescribed medicines. it is possible to search by medicine name, brand name, condition, disease or infection. their aim is simple –

that any parent, wherever they are, have information on their child’s medicines that they need and can trust.

it’s good to have access to this information. nonetheless, it gives me pause for thought.

* in fact each capsule is 300mg not 100mg as i thought when i wrote this post – so, her dose is 300mg on day one, 600mg on day two and 900mg on day three and thereafter.


my daughter’s lunch

cheese and chorizo wrap

carrot sticks

kiwi and lime smoothie

chocolate mousse

tramadol


Pain Less

a friend has pointed me in the direction of a new exhibition on the future of pain relief – Pain Less is curated by the Science Museum, and runs until 31st August 2013.

Pain Less explores pain from a number of perspectives – uncovering the stories of those who live with relentless, chronic pain (estimated to affect one in five of us), and those who, remarkably, feel no pain at all.

i had a go at the game Ouch – where you use a variety of strategies to zap pain – but i found this quite stressful as was so bad at it! still, it makes several points well – that pain killers become less effective over time, and the experience of pain can be modified by mood.

there are some further resources at the Pain Less blog, including a short video on the relationship between mood and pain – Pain in the Brain:


freefall

my daughter has been bumped up to Tramadol to help manage the pain.

last night, she fell into sleep in a kind of freefall.

when you try to talk specifics, no-one knows. three months? (we’re at that point). six months? nine months? a year?

what is apparent, is the pain is poorly understood; frankly, no-one much wants to understand.

4 a.m. – as she sleeps, i wake from a dream about her.

we’re falling through different parts of the night.