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.
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)
a week ago my daughter was prescribed Gabapentin to help control symptoms of functional abdominal pain.
yesterday, we met with a senior clinical psychologist, who was clearly startled by the change in her.
she made the point that my daughter had been making good progress before the Gabapentin, and that a lot of this was down to her. maybe it was all down to timing, she said, maybe the drug would not have worked if introduced earlier.
it’s true – we were beginning to see changes in my daughter. there have been fewer of the very painful spasms that have plagued her, and the background pain had lessened a little. she had managed to return to school, and we were working towards getting her in a strong enough place to be able to go on a school trip in mid-July.
however, Gabapentin seems to have switched something inside my daughter. the changes in her are remarkable. she can stand up, put on her own socks and shoes, dress herself, move around freely – she can even run again.
it is not fully understood why Gabapentin – an anti-convulsant – should work so well for pain relief, nor why it does not work for everyone.
during the past week, the pain has crept back twice, in the evenings. she is still tender in the area around her appendix where the pain has always been. the spasms are down to a handful a day, as opposed to every few minutes.
i’m trying not to think too hard about this, and accept it for what it is. the side-effects – confusion, short-term memory loss – are apparent, but manageable – though i wonder about the longer-term impact on her development. she’s been anxious at times, and switches between being slightly hyper and then quite tired, as if something is out of synch in her.
Gabapentin has built a high, high wall around my daughter that’s keeping out the pain. it’s holding, and that’s what matters.
memory loss, confusion – these are both common side-effects of Gabapentin – both were evident in my daughter yesterday.
i know she’s still getting used to this drug in her system. maybe the dose – 3 x 300mg daily – will need to be revised down.
there are no quick fixes.
my daughter has been in near constant pain since January – pain that woke her night, that remained localised near her appendix; pain that was worsened by movement and meant she could not sit up or stand up without help. she was diagnosed as likely having functional abdominal pain in February.
in March, perhaps the most stressful point in all of this, i took a call from an associate member of the gastro team who told me:
1) gastroenterology could do nothing for my daughter – the pain was functional, nothing was wrong;
2) the hospital psychology team were available to work with us if we wanted them to;
3) they could refer my daughter as an in-patient to a centre where pain was treated as secondary to emotional or physical abuse.
i was shaking after the call ended. i had tried to get advice on pain management from the gastro team – referral to a pain clinic, a TENs machine – anything that would help my daughter cope. but nothing – NOTHING – was forthcoming. this was bad enough, but then for it to be inferred that her pain was secondary to emotional or physical abuse was dreadful. it felt as if we were being sucked into some Kafkaesque nightmare.
my daughter was discharged from hospital with no other pain medication than paracetamol and ibuprofen; no follow-up appointment with the gastro team was offered. any interest in her on-going condition stopped at the point of discharge. we were dropped. we went back to our GP. she said she was not an expert in abdominal issues and referred us back to the gastro team. the gastro team refused to engage further, even though they had acknowledged that my daughter’s pain was severe. they went on to say that they would not support referral if we wanted a second opinion.
i think the term is stonewalled. the weeks went by and the weeks by and my daughter’s condition did not improve.
then, towards the end of March, my daughter was seen by a rheumatologist for a completely unrelated issue – this takes the form of a low-key annual review in Norwich. my daughter has hypermobility, and has been treated in the past for complex regional pain syndrome after a bad fall in a roller hockey tournament. the rheumatologist said she sees a lot of hypermobile children who have painful episodes; hypermobile children can be more sensitive to pain. she thought the abdominal pain was likely neuropathic, but that she was no expert in abdominal issues, and said the gastro team were best for that. she prescribed Amitriptyline as a muscle relaxant and to help ease the pain.
the rheumatologist called again last week and offered my daughter an appointment first thing in the morning if we could get to Norwich. we were there with time to spare.
she prescribed Gabapentin – and since then, my daughter has been completely transformed; it is as if something has switched inside her. she is not pain-free, but the pain is greatly reduced.
i am frankly very dissatisfied with the care provided to my daughter at our local hospital – that the gastro team could not, in fact did not, advise on pain relief beggars belief. they are the experts in abdominal pain. they see it time and time and time again. not intervening consigns these children to months of unnecessary pain.
i do not think this is acceptable.
i think it was my daughter’s very great misfortune not to have been seen in Norwich from the outset.