who cares?

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.

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Gabapentin

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:

Gabapentin: possible side effects in children

Gabapentin: possible side effects in children

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.


2 a.m. red flag flying

pitched out of sleep half an hour ago by my daughter howling with pain: pain in her abdomen and dreadful pain along the top of her right thigh.

she had refused all pain relief yesterday.

she has settled with liquid paracetamol and ibuprofen and is asleep again.

i’m awake. the night stretches out, black and red.


Pain Less

a friend has pointed me in the direction of a new exhibition on the future of pain relief – Pain Less is curated by the Science Museum, and runs until 31st August 2013.

Pain Less explores pain from a number of perspectives – uncovering the stories of those who live with relentless, chronic pain (estimated to affect one in five of us), and those who, remarkably, feel no pain at all.

i had a go at the game Ouch – where you use a variety of strategies to zap pain – but i found this quite stressful as was so bad at it! still, it makes several points well – that pain killers become less effective over time, and the experience of pain can be modified by mood.

there are some further resources at the Pain Less blog, including a short video on the relationship between mood and pain – Pain in the Brain:


i wake up…

…and the first thing i hear is my daughter crying in pain.

she can’t get out of bed unaided, one of us has to help her. that makes her cry out.

and so it begins again – liquid paracetamol at six hourly intervals.

i find it remarkable that after three months there is no pain-relief available other than paracetamol, even though her pain has been acknowledged as severe.

the pain clinic at the local hospital only sees adults.

i think that’s outrageous.