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.

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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.


keep on keeping on

i broke my shoulder on Saturday.

things have been a bit upskittled since then. it’s a nuisance.

my daughter takes Gabapentin three times a day to control her pain – 900mg in total. yesterday evening she was quite sore. it turned out she’d forgotten to take her tablet in the morning and she didn’t get her second tablet (which was her first, in fact) until 4.30 p.m.

she went back to school today for an hour – the plan is to get her into school most days for one or two lessons, and to build her stamina again. although she was still sore this morning, she’s happier than ever. i think we may have reached a tipping point with this – at least i hope so. as she regains her independence it helps to move the pain away from her. it is key to her recovery, i think.

with one arm in a sling, i can’t drive, but friends are stepping in to help. it means she can get to school and will be on track to return full time in the Autumn.

now that’s something to look forward to.


making plans, 1

what a feeble blogger i am. one bad tooth and i’m floored – for a week.

since my previous post, my daughter has been to school twice.

it’s easy to forget how central school life is; returning is critical to her recovery.

the worst thing about chronic pain is the way it sends you in circles – can’t possibly do ‘x’ because of the pain – so ‘x’ never happens…and pain not only nips at life, it pinches it in. worry winnows it further.

my daughter and i looked at her school timetable today and chatted about the classes she’d like to go to each day. after half term we’ll aim for her to be in school most days, for one session, then two. by the end of the school year hopefully we can build this up to half-days.

maybe that’s too ambitious.

i don’t know.

the choice is quite stark: be stuck at home on the sofa in pain, or go to school. she’ll still be in pain, but she’ll be with her friends and learning again.

it is, as they say, a no-brainer.


papier-mâché ice cream cone

my daughter says that the papier-mâché ice cream cone she started today will look good enough to eat one day. she started it today in class – her first class since January.

after such an unpromising start to the day, she made it into school for the last class: art.

she is already looking forward to next week when she can go back. the papier-mâché ice cream cone project will span several weeks.

we’ll add music class next week. the aim: one class each day.

papier-mâché ice cream cone, i have no idea what you look like, but i love you.


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?


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.