two years on

it has been nearly two years since my daughter was knocked off her feet by functional abdominal pain. she was eleven years old and was away from school for six months. she didn’t get occasional tummy aches – she was in almost constant pain, which was worsened by movement. after referral to Great Ormond Street Hospital Pain Control Services, and being prescribed Gabapentin, she made a steady recovery, and returned to school in September 2013.

she had some home schooling while she was away, but really it was very little, and functioned more as means to keep some routine in her life and maintain links with school and friends. we bought her a new laptop. she played minecraft. she played a lot of minecraft, becoming more and more adept. over the past year, and since returning to school, her interest has widened. she’s become a bit of a gamer-girl, happily running her own server, and doing coding to get the game to do what she wants it to.

two years ago we could not believe what was happening to our daughter, or what would become of her. we worried about the time she’d lost – six months seemed to punch a hole in her education. but we needn’t have. she found other things to interest her and made them hers. and, okay, gaming, but she learned too. and today, almost two years after the start of this, she was accepted into a new state-of-the-art university technical college. she took along a page of code she’d written and the Principal interviewing her, beamed.

it is clear measure of how far my daughter has come.

it wasn’t easy, but she made it through on her own terms, and i am very proud of her.


The Mysteries of Chronic Pain – Elliot Krane


the year, ending

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.

that’s it.

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.


holding back?

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.

emc+

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)

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.


where are we at? where are we going?

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.


circles of the mind

Ouroboros

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:

Image: Andy Thompson Art

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.