two years on

it has been nearly two years since my daughter was knocked off her feet by functional abdominal pain. she was eleven years old and was away from school for six months. she didn’t get occasional tummy aches – she was in almost constant pain, which was worsened by movement. after referral to Great Ormond Street Hospital Pain Control Services, and being prescribed Gabapentin, she made a steady recovery, and returned to school in September 2013.

she had some home schooling while she was away, but really it was very little, and functioned more as means to keep some routine in her life and maintain links with school and friends. we bought her a new laptop. she played minecraft. she played a lot of minecraft, becoming more and more adept. over the past year, and since returning to school, her interest has widened. she’s become a bit of a gamer-girl, happily running her own server, and doing coding to get the game to do what she wants it to.

two years ago we could not believe what was happening to our daughter, or what would become of her. we worried about the time she’d lost – six months seemed to punch a hole in her education. but we needn’t have. she found other things to interest her and made them hers. and, okay, gaming, but she learned too. and today, almost two years after the start of this, she was accepted into a new state-of-the-art university technical college. she took along a page of code she’d written and the Principal interviewing her, beamed.

it is clear measure of how far my daughter has come.

it wasn’t easy, but she made it through on her own terms, and i am very proud of her.

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2 Comments on “two years on”

  1. Jane Castle says:

    We are in month four with our 19 year old daughter. She has been hospitalised for all but 23 nights since 25th December. I am so concerned that she is being treated with heavy doses of morphine based pain killers and is developing more and more problems. My worry is this narcotic bowel problem that the drs just don’t seem to register. I empathise with so much in this blog.

    • guinglasfurd says:

      oh, i am so sorry to hear about this. i wrote this blog because i needed to document my daughter’s experience. i wrote from the thick of it, genuinely bewildered (and to some extent, distrustful). it was very difficult to believe that there was ‘nothing wrong’ with her – which, in the context of a child utterly debilitated by pain, offered little reassurance and was unhelpful. we could see no end in sight. my daughter took a variety of pain killers. there was/is no specialist pain service for children in our region, but she was seen by a paediatric anaesthetist, and prescribed Tramadol, which made her very unwell. psychotherapy materials/advice was generic and clearly geared towards children who were far less affected by pain. finally, my daughter was referred to Great Ormond Street and prescribed Gabapentin, an anti-epilepsy drug. in lay terms, it was described to us as enabling her to ‘reboot’. honestly, it was as if someone had flicked a switch in her. in a week, she went from being unable to get out of bed unaided, to putting on her roller skates again. every child is different. psychotherapy is valuable, but i think the resources my daughter had access to were uneven and could be improved. if you are in any doubt, you need to be clear with your consultant (& i know just how stressful this can be). if they agree the pain is neuropathic, then Gabapentin could be useful: http://www.patient.co.uk/medicine/gabapentin-neurontin. all the very best and i hope your daughter comes through this soon. x


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