keep on keeping on

i broke my shoulder on Saturday.

things have been a bit upskittled since then. it’s a nuisance.

my daughter takes Gabapentin three times a day to control her pain – 900mg in total. yesterday evening she was quite sore. it turned out she’d forgotten to take her tablet in the morning and she didn’t get her second tablet (which was her first, in fact) until 4.30 p.m.

she went back to school today for an hour – the plan is to get her into school most days for one or two lessons, and to build her stamina again. although she was still sore this morning, she’s happier than ever. i think we may have reached a tipping point with this – at least i hope so. as she regains her independence it helps to move the pain away from her. it is key to her recovery, i think.

with one arm in a sling, i can’t drive, but friends are stepping in to help. it means she can get to school and will be on track to return full time in the Autumn.

now that’s something to look forward to.


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.


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.


making plans, 1

what a feeble blogger i am. one bad tooth and i’m floored – for a week.

since my previous post, my daughter has been to school twice.

it’s easy to forget how central school life is; returning is critical to her recovery.

the worst thing about chronic pain is the way it sends you in circles – can’t possibly do ‘x’ because of the pain – so ‘x’ never happens…and pain not only nips at life, it pinches it in. worry winnows it further.

my daughter and i looked at her school timetable today and chatted about the classes she’d like to go to each day. after half term we’ll aim for her to be in school most days, for one session, then two. by the end of the school year hopefully we can build this up to half-days.

maybe that’s too ambitious.

i don’t know.

the choice is quite stark: be stuck at home on the sofa in pain, or go to school. she’ll still be in pain, but she’ll be with her friends and learning again.

it is, as they say, a no-brainer.


papier-mâché ice cream cone

my daughter says that the papier-mâché ice cream cone she started today will look good enough to eat one day. she started it today in class – her first class since January.

after such an unpromising start to the day, she made it into school for the last class: art.

she is already looking forward to next week when she can go back. the papier-mâché ice cream cone project will span several weeks.

we’ll add music class next week. the aim: one class each day.

papier-mâché ice cream cone, i have no idea what you look like, but i love you.


little blue pills

amitriptyline 10mg.

one, then two, then three.

pluses: a child who has her chatter back, who settles in the evening, is asleep by 10, and rarely wakes in pain at night.

minuses: a child completely zonked in the morning; a child with sudden fears of death and dying – fears that push up from her subconscious and surface, wanting air.

a week ago, and on the advice of the psychologist, we reduced the dose to two 10 mg tablets.

since then she has been less tired in the morning, but in more pain at night.

last night was the worst night for a while, and this morning she was in worse pain again. today was a school day, but she only coped with 20 mins. she is due to go in again this afternoon to join an art class. i’m writing this. she’s on the sofa, crying.

the options look stark: drugged up child in less pain; wakeful child in more pain – pain that is already reining her back in.

what kind of a choice is that?


pizza power

my daughter went out two hours ago to a pizza party in town with her friends.

i’ve just received a text message from her

Having the best time ever!!!!!

and that’s just about the best text message ever too.