eat, sleep, live

this evening, my daughter is going for a sleepover with a friend. a week ago, this would not have been possible.

should she go? every small twinge of pain she has and worry flares again – bright as ever. what if the Gabapentin fails spectacularly, suddenly…?

what if?

what if?

what if?

what if all of this is too good to be true?

i have to switch my head off. she has to go.

months of chronic pain have changed our lives. i wasn’t aware of it to begin with, but pain changes so much – it makes you wary and worried; it refuses to be defined or answer the questions you have of it. it confines, building a kind of structure around the family that has hardened over time.

it’s time to chisel our way out.

my daughter will go for a sleepover and my husband and i will go out for an early evening meal. we can get back easily, if we need to. it will be our first night out together since last year.

i’m sure my daughter will be fine – Gabapentin will at least ensure she gets some sleep.

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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.


Gabapentin, 4

memory loss, confusion – these are both common side-effects of Gabapentin – both were evident in my daughter yesterday.

i know she’s still getting used to this drug in her system. maybe the dose – 3 x 300mg daily – will need to be revised down.

there are no quick fixes.


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.


where children run

we went out today, a family day out, our first since last year.

an hour’s drive took us deep into Hertfordshire along ever narrower lanes heaped high with cow parsley; beyond, yellow fields of rape, violent with sunshine. this sudden, brilliant Spring, and my dear, darling daughter wanting more than anything to be there already.

if you’ve not been, then you should: the Henry Moore Foundation, Perry Green.

it’s a place where children can run and play and be free and Moore’s magnificent sculptures invite you to approach and touch and dream.

my favourite work was Moore’s Double Oval.

the kids were not so sure about Moore’s abstract shapes, but what did that matter? – they were too busy running.

my daughter too.

Double Oval, Henry Moore, 1964

Double Oval, Henry Moore, 1964


Gabapentin, 3

my daughter put on her roller skates today for the first time in more than four months.

i don’t know what is more amazing – the fact that she put her own skates on, or that she then stood up on her own, or that she skated the length of the lounge and back, and ended with a pirouette.

i’ve been looking forward to this day for a long time. Gabapentin seems to have delivered it to me, post-haste!

i look at her and it’s as if rewind and fast-forward are happening at the same time.

wow.

skates


stand up, stand up!

my daughter just stood up. she managed to get up from the sofa on her own.

she didn’t ask for help.

she didn’t slide awkwardly onto the floor then lever herself up from there.

she manouvered herself to the edge of the sofa and, with great effort, pushed herself up.

a first.

and although we’ve been beginning again all over again through the past four months, this is where i think it really begins.

with independence comes strength.

with strength comes recovery.