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, 5

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.


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.


life, death, hamsters

my daughter’s pet hamster died last week. not even an emergency dash to the vet could save it.

and although the vet said don’t give up hope, the hamster is now buried in the garden and planted over with anemones.

maybe this is simplistic, but functional abdominal pain is often associated with anxiety, grief. distress – all these things can worsen the pain.

my daughter was very upset at losing her hamster, but there was no sudden clutching of her stomach, no worsening of symptoms. if anything, she’s been brighter these past few days.

i’ve written elsewhere of equations that don’t balance.

but hey. life goes on. we have two new tiny hamsters – parsley and sprout – and they are a treat. these are not they, but are almost as cute:

i’ve said it before – hamsters should be available on the NHS.


the scale of nothing at all

i find i am going in circles.

i’m not only thinking circular thoughts, but each day pretty much delivers me back to where i set out – a child who wakes in pain, manages to a greater or lesser extent, and is in worse pain again by the end of the day.

we have our third psychotherapy meeting later this week. maybe it is time to try and straighten the path, to understand where we are headed. what is planned? how will psychotherapy help?

so much tiptoes around the edge and is left unsaid. what assumptions are we working with? an anxious child?

we went out last night for a bar snack in Wicken.

my daughter ate at the table. she coped. afterwards, we crossed the road and went to look at the windmill.

Wicken Windmill

we made a short film, to send to a friend. and, because it was not clear, my daughter stood at the foot of the windmill to show the scale of it.

i looked at the clip once we were home. there’s my daughter – dressed in baggy, comfortable clothes (the only clothes she can bear wearing) – clutching her tummy. there’s a moment, towards the end, when she walks back towards me. she is unsmiling, unaware she is being filmed. her face is pulled down with pain.

we took her out for a meal because it is her birthday tomorrow. but whose interest were we serving? hers? ours? it was, ultimately, an unrelaxed time. i was conscious all the time of the need to get her (&, frankly, the whole family) through it. it was clear that she would rather have been at home, where she is comfortable, than being made to sit upright at a table and eat an over-priced plate of ham and chips.

she did her best.

by insisting that we go out, what did i hope to achieve? some blithe reassurance that she is getting better improving? that we have made a tiny step back towards being normal? have we?

circles. circles. circles. how can i know the scale of anything when the path curves towards me so tightly?


4.30 a.m. red flags

it was after 11 p.m. before my daughter fell asleep last night.

she gets spasms of pain that jolt her awake. she’s had a number of bad evenings in the past week, the pain tipping her from sleep.

i remember after she was born, waking before she did in the night. i used to think it funny – a kind of trip wire. maybe that’s hardwired into me now.

it’s times like this when, cupped in silence, i find it hard to square my daughter’s symptoms with the diagnosis.

Determining whether CAP [Chronic Abdominal Pain] is physiologic or functional can be difficult. Although the presence of red flag findings indicates a high likelihood of a physiologic cause, their absence does not rule it out. Other hints are that physiologic causes usually cause pain that is well localized, especially to areas other than the periumbilical region. Pain that wakes the patient is usually physiologic.

The Merck Manual: Chronic and Recurrent Abdominal Pain

other red flags include: persistent pain that is localised in the lower right-hand quadrant and pain that is worsened by movement.

this characterises my daughter’s pain exactly, yet no-one has assessed how movement worsens her pain.

what’s our experience? once placed in the FAP box, it’s very difficult impossible to get out. it’s a deep, deep box. you have to haul your red flags a very long way before anyone will notice they are flying.


something from nothing

three months in, and what can i tell you about functional abdominal pain?

the diagnosis rules out appendicitis, Crohn’s, colitis, or an infection.

that’s what i understand when i am told there is nothing wrong. that nothing can be found.

it places me in a position of having to believe that something – i.e. my daughter’s pain – can come from nothing.

seeing as you already know about my fears, you may as well know that i was kicked out of physics in school – you’d struggle to find a less able mathematician than me. and yet, via twitter, and my research into some writing, i came across Lawrence Krauss, and his thinking around how something can come from nothing.

i don’t need to be able to understand the maths to imagine a flat universe.

maybe when it comes to understanding functional pain, i need to do the same. engage my brain on some other level. then, perhaps, i will be able to accept that sometimes pain just happens.

that something can indeed come from nothing.

Lawrence Krauss presents ‘Something from Nothing and the Magic of Reality’ 12th April 2012.