the year, ending

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.

that’s it.

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.

Advertisements

5 Comments on “the year, ending”

  1. niki says:

    Good to hear your daughter’s progress and wishing her continued improvement. I agree with your lessons learnt as we have experienced the same with our 5 year old. Is your daughter now back at school full time? How does she/you cope when she has spasms of pain? How do you respond to it? I know the ages of our children vary so to a certain extent my five year old is attention seeking sometimes (although not always), but sometimes I’m at a loss to know what to do. I try to normalise it but that annoys her sometimes. Thank you.

    • hi Niki, yes, my daughter’s back at school full time. the school have been amazing, and kept a close eye on her through the winter term. she does still get some pain, and it is clearly anxiety-related, but it resolves within a few hours. she was referred to the pain services clinic at Great Ormond Street Hospital – and the service they provided there was exemplary – I only wish she had been referred there earlier (she had an appointment at end of August). they continue to monitor her, and provide support over the telephone too. it’s not easy, but children pick up on their parents’ anxiety so easily. if you know the pain is functional, then I think support (a cuddle) and distraction (if poss) are key – and talking it through, so a child understands and learns, and knows that the pain will go again, and develop the skills to cope with it… i don’t know; it’s just so stressful when you’re caught up in the middle of it, but i think that’s all we can do. i’m so glad to hear that your daughter is coming through this too – good for her, what a little star! 🙂 – all best wishes for 2014 – and here’s to a pain-free year…

      • Karen Lawson says:

        My daughter has suffered from FAPS for over 2 years now. I am reading your blog with extreme interest as I feel so alone in this and as if I am the only person that understands what is happening to her. Thank you for posting all this.

        • i really hope you find it useful. my daughter is through this now (but made us aware of how things such as this can come from nowhere) – it was very difficult at the time and not easy to make sense of, which is why i started this blog. i don’t know where you’re writing from, but GOSH in London were brilliant, and we were fortunate to have a very understanding and supportive Head of Year in my daughter’s school – all of that was really helped us provide a framework to cope better. my daughter also made good friends with a girl of a similar age going through this at the same time – and they supported one another too (doing visualisation/breathing exercises together, and just generally connecting and having fun). i hope your daughter comes through this soon – or at least finds strategies that help her cope. all best wishes x

  2. Karen Lawson says:

    Hi, thank you for your reply. My daughter has had a particularly bad time this year for over two months suffering with her tummy pain as well as some debilitating illness. Blood tests have shown her iron levels are low so she is now on iron. Hopefully this will help her general health but I have turned to a homeopath for help in coping with the tummy pain as everyone else seems to have, well given up to be honest. I am keeping my fingers crossed that we can conquer this or at the very least manage the pain better. Did you sometimes feel like you were the only one who cared about your daughter being in pain? I’m really fed up with others seeming not to place any priority on ridding my child of pain. After all we don’t like animals to be in pain so why should we just shrug it off when a child is suffering?


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s