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.
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.
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?