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.
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.
it’s time for my daughter’s second Gabapentin of the day. i push the tablet out of the blister pack onto the palm of my hand.
300mg Gabapentin it says, in red, on the box. 300mg. can’t miss it.
that can’t be right.
a moment of disconnect.
everything bounds away at speed.
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.