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.

Advertisements

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.


Gabapentin, 2

it’s time for my daughter’s second Gabapentin of the day. i push the tablet out of the blister pack onto the palm of my hand.

300mg Gabapentin it says, in red, on the box. 300mg. can’t miss it.

that can’t be right.

a moment of disconnect.

i thought she had been prescribed 100mg.

everything bounds away at speed.


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.


little blue pills

amitriptyline 10mg.

one, then two, then three.

pluses: a child who has her chatter back, who settles in the evening, is asleep by 10, and rarely wakes in pain at night.

minuses: a child completely zonked in the morning; a child with sudden fears of death and dying – fears that push up from her subconscious and surface, wanting air.

a week ago, and on the advice of the psychologist, we reduced the dose to two 10 mg tablets.

since then she has been less tired in the morning, but in more pain at night.

last night was the worst night for a while, and this morning she was in worse pain again. today was a school day, but she only coped with 20 mins. she is due to go in again this afternoon to join an art class. i’m writing this. she’s on the sofa, crying.

the options look stark: drugged up child in less pain; wakeful child in more pain – pain that is already reining her back in.

what kind of a choice is that?


11 p.m.

my daughter is crying with pain when she should be asleep.

whatever the hell is going on in her body, i hate it.

i hate it.