was it really necessary?

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.


5 Comments on “was it really necessary?”

  1. cavalierdec says:

    Thank you so much for this blog. We are in North West England and are going through this nightmare. My 12 year old daughter hasn’t walked since April due to debilitating unexplained pain linked with a splenic cyst. She had surgery for the cyst but the pain continues. It feels like we are the only ones to go through this. Good to see there is light at the end of this very dark tunnel.

    • guinglasfurd says:

      I’m so sorry to hear about your daughter, and I know it is difficult not to worry. A year on, my daughter has completely recovered, and I hope that offers some reassurance – I was talking about it yesterday, and still find it hard to explain what happened, that it came ‘out of the blue’ with no trigger that we could see, and affected my daughter so badly. We received excellent support from Great Ormond Street Hospital, Pain Control Services: http://www.gosh.nhs.uk/medical-information/clinical-specialties/pain-control-service-information-for-parents-and-visitors/ – I only wish we had had access to it earlier. What differed was the whole team approach they took, so that we felt fully supported. I don’t know what service provision is like in the NW, but I do know that across the UK, pain support services for children are woeful. It’s shocking, to be frank. All best wishes, and I hope your daughter is pain free soon.

      • cavalierdec says:

        It’s brilliant to hear that your daughter is fully recovered. Is she still on Gabapentin ? We are under Alderhey in Liverpool. We went there when the cyst was discovered in April and had a 7 week stay. During that time the pain was dreadful when moving and it endured after the various treatments. For us as well it came completely out of the blue and has left us confused and desperate. My daughter has been on a very slow build up of Gabapentin ( 7 weeks now) as she tends to react to meds. She reaches the 900mg a day dose on Fri and I am hoping beyond hope that this starts to have some effect. We live 100 miles from Liverpool so are dependent on community services which are woefully lacking. I am fighting for the multidisciplinary services that we need – physio once a week isn’t going to sort this.
        Thanks again for your blog, it has given me hope.

        • guinglasfurd says:

          no, she’s no longer on Gabapentin. From memory, the dose was increased quite quickly to 900mg a day – it had a marked effect, and after a fortnight the pain had substantially gone – but every child is different. Pain can become entrenched and Gabapentin seems to disrupt that (the nurse likened it to a computer being powered down and then switched on again — and it really seemed like that, the pain just switched off in my daughter). Gabapentin had all kinds of side effects that were worrying at the time and affected her short-term memory a little, but that stopped as she was taken off the drug again (a slow process over months). It seemed to ‘re-set’ her in some way, and really had a remarkable affect. Apart from a couple of isolated incidents, that were very clearly caused by anxiety, she has been pain free since.

          • Cavalierdec says:

            Thank you for all the info. My daughter seemed to improve very slowly in the first two weeks at home but the last two weeks have been dreadful. Unbearable pain when transferring. I can’t make sense of any of it particularly as she has been on increasing doses of gabapentin throughout this time. Good to know that there maybe an effect at 900mg. It is such a worry what all this will do to her. Thank you for telling your story. It gives me hope.

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