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.
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.
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.
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.
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.
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.
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)
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.
this evening, my daughter is going for a sleepover with a friend. a week ago, this would not have been possible.
should she go? every small twinge of pain she has and worry flares again – bright as ever. what if the Gabapentin fails spectacularly, suddenly…?
what if all of this is too good to be true?
i have to switch my head off. she has to go.
months of chronic pain have changed our lives. i wasn’t aware of it to begin with, but pain changes so much – it makes you wary and worried; it refuses to be defined or answer the questions you have of it. it confines, building a kind of structure around the family that has hardened over time.
it’s time to chisel our way out.
my daughter will go for a sleepover and my husband and i will go out for an early evening meal. we can get back easily, if we need to. it will be our first night out together since last year.
i’m sure my daughter will be fine – Gabapentin will at least ensure she gets some sleep.