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.