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.
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:
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.
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.
i’m still trying to get my head straight after yesterday.
my daughter returned to school, her first visit since January. even a week ago, i was unsure whether this was going to be possible. we arrived when the other children were in class, and she spent half an hour with her home tutor looking at an exhibition about Anne Frank in the school library. we’d spent time the day before looking at online resources from the Anne Frank House museum, to help place the school visit in her mind.
my daughter has also had the support of a new friend, who suffers from chronic abdominal pain too – a girl who has already faced up to the experience of returning to school. she was able to say to my daughter that, yes, it was tough, but it was fun too. what had once seemed impossible for her, was possible. she’d managed it, and so too could my daughter.
whilst my daughter visited the exhibition, i spoke with her Head of Year, and we made plans – loose, flexible plans, to try and accommodate her return. another visit to school next week, this time to include meeting her school friends.
then, from there, we went to the hospital to meet with two clinical psychologists.
my daughter met with a psychologist separately. they discussed all she has achieved and used that as a basis to set new goals – eating breakfast at the table every day (she will be allowed to lie down after five minutes if necessary); agreeing what she could do to dress herself, continuing to go on short walks.
in the room next door, we talked about the limits of the gastroenterology service, whose remit it is now clear extends no further than diagnosis. they will approve a referral to Great Ormond Street Hospital Pain Service Clinic. pharmacological decisions become the responsibility of our family GP. clinical psychology support/therapy remains with the hospital.
any remaining expectations we had of coordinated, joined-up care were absolutely dashed.
we spoke at length about pain behaviour – pain the bully; pain the piper that makes the whole family dance its tune.
what emerged from the discussion is the importance of not falling, unwittingly, into patterns of caring that reinforce dependency. it took a little while for the implications of what was being said to become clear. it’s very very difficult as a mother to step back, to step away from a child in pain. what crushes me at times is this absolute sense of being locked into a situation we cannot break out of. i know my daughter needs to do more for herself. the more she is able to do for herself, the more likely she will be able to cope. from that comes control, and the ability to push the pain further and further away from herself. it does not mean she will be pain free. it means the pain will no longer be in control of her.
well, at least that is what we were told. at times i felt as if i was being read to from a textbook. presented with an equation that always balances.
and yet there are limits. my daughter cannot get out of bed, she needs help standing up from sitting down. she cannot sit up from lying down in the bath. if she had a hoist, maybe she would be able to pull herself up. but where on earth do we get a hoist?
chronic, debiltating pain reminds me of the Ouroboros, the mythical creature locked in an endless cycle of consuming itself.
here is a striking modern interpretation:
i look at this image and it makes me think. i need to do all that i can to help my daughter bring her pain under control, but i need also to be sure that the care i provide does not perpetuate a cycle of dependency. the whole family, her friends, herself – all of us need to be part of breaking the seemingly endless cycle that chronic pain presents.
but i cannot stand by as my daughter struggles to get out of bed. there are limits. she is my daughter. i am her mother. the relationship is inevitably one of dependency too.
i started off this post wanting to discuss an article – a piece of research from The Royal Alexandra Children’s Hospital in Brighton – that looked at a number of children with chronic abdominal pain, localised in lower right-hand quarter of the abdomen. appendicitis had been ruled out in these children, (as with my daughter), but they continued to have disabling pain for months, sometimes years after that. the hospital decided these children should be offered an appendectomy after all – and, in something like 80-90% of cases, the pain resolved post operation.**
can i find this piece of research now?
my firefox bookmarks are in one long, jumbled list.
looking through my bookmarks makes salutary reading. they go from listing things such as How to Cook the Perfect Yule Log, The Universal Language of Lullabies, Descartes and Cartesian Coordinates, and Did Manet Have a Secret Son? to bookmarks almost entirely focused on pain – causes of pain, types of pain, pain relief, therapy. from the third week of January, any preoccupation with cookery or Descartes or art or music ends. it’s all set out in one simple, stark list:
…i could go on…but i won’t.
**i found the article, published in 2010: Diagnostic Laparoscopy and Appendicectomy for Children with Chronic Right Iliac Fossa Pain – An Aggregate Analysis – ‘Symptomatic improvement can be expected to be 88% immediately and up to 100% in the long term.’ published by the Journal of Paediatric Surgical Specialities
we met with a senior clinical psychologist on Wednesday to discuss what next for my daughter.
we did our best to differentiate between being reassured and being worried. that is, being reassured that the tests she has had (see category on diagnosis) have found no underlying ‘organic‘ cause for her pain, but worried that the pain is on-going and disabling. we agreed, again, that better pain management is a priority.
i was woken at 4 a.m. by my daughter crying out in pain in her sleep. she is unable to get out of bed, or sit up, or stand up without help. all of these things cause her to cry out in pain. paracetamol and ibuprofen help, but are insufficient.
the hospital where my daughter is being reviewed has no specialist pain service for children – the pain clinic only treats adults.
it gets worse.
it seems there are no specialist pain services for children in the whole of the eastern region of the UK. The British Pain Society maintains a list of paediatric pain services and clinics in the UK (pdf file). Great Ormond Street Hospital Pain Control Services is the nearest – though quite how anyone gets a child from the East in debilitating pain into central London to access the service is anyone’s guess. pain services across the UK are under pressure because of NHS reorganisation and funding cuts. Dr Rajesh Munglani reported on the impact of NHS reforms in Pain News Summer 2012 (Vol 10, Issue 2).
in the short-term, this is how it works. it’s Friday. sometime today, i will get a call from a consultant who has an interest in paediatric pain relief. he will see my daughter on Monday. we don’t know when, only that he is in surgery for most of the day (it is his job after all). he will make time to see her. it’s a huge relief to know that advice is within reach.
but is this how pain services for children at one of the UK’s leading hospitals should work?
mind the gap, kids.