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.
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.
my daughter went out two hours ago to a pizza party in town with her friends.
i’ve just received a text message from her
Having the best time ever!!!!!
and that’s just about the best text message ever too.
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.
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?
my daughter managed forty-five minutes in school this morning, her second visit since January. she spent thirty minutes sitting on a sofa and working through a science exercise with her home tutor, and then had fifteen chat-filled minutes with friends during break time.
her form teacher was clearly delighted to see her again. ‘her friends help to distract her,’ she said.
on the way home, we stopped and made a short film to send to a friend.
all-in-all, we were out for an hour, though most of this time was spent sitting down.
it’s true – friends, making short films, walks to the end of the road and back – all help to distract her. they are important goals to achieve. but there’s no getting away from the fact that she’s in pain. the pain is as attached to her as her shadow is.
what next, i wonder? what’s best? should we extend the weekly session in school, or try for two shorter sessions instead?
the more we extend the session, the more likely it is that she will push up against the limits of distraction.
i am writing this watching a small plate of food going cold on the kitchen table opposite me.
today’s small step forward was to see if my daughter could eat lunch at the table. she’s managing to eat breakfast at the table, although is sore afterwards.
no, she said, she doesn’t want to, ‘it hurts me, i think you’ll find.’
i’ve left her to think about it. told her to let me know when she would like me to help her up so she can come through and eat.
when does boundary setting become behaviour management become punishment?
it’s a trajectory i am deeply uncomfortable with.
at our meeting last week, the psychologist said –
1) complete recovery is unrealistic
2) increased activity will result in a return of function
it seems to me that these take us in opposite directions.
her lunch is cold.
and i feel like a bully.
my daughter is determined to get back to normal. next week, she’ll be twelve. we’ve arranged a small party at home. she can do that.
then, today, a birthday invitation arrives to a friend’s party in a couple of week’s time. pizza – gluten-free too – at a restaurant fifteen minutes away. she says she’ll go if she’s up to it. so that’s a very definite maybe.
she needs a brace, her teeth are crowded and hurt. through all of this, we kept the appointment to see an orthodontist, she had impressions taken, and i booked follow-up appointments for her to have four teeth extracted. today, she should have had two teeth removed. at the last minute, she refused. she couldn’t go through with it. she raged in the car all the way home, furious at the pain within her.
i knew going to the dentist was a close call. and i was worried that if it all fell over at the last minute, which it did, it would set her back. crying worsens the pain.
i don’t know. there are days when close call follows close call follows close call.
we set small goals: eat breakfast at the table; dress herself; short walks out each day.
but life spins around her beyond that. she sees that.
she wants it back by the bucketful.