through the looking glass, across the Atlantic

i’m a twin. from the beginning we made an unlikely pair – him fair and me dark – mismatched kids who spent most of our first years kitted out in hand-knitted jumpers and shorts and pudding-bowl hair cuts. when we were five, we were both given a pair of red clogs, but stamped our different rhythms up the high street, refusing to be the same child. one day, an elderly woman stopped my mother, ‘oh, the twins – what lovely boys,’ she said, then went on her way. i twisted my heel in the pavement’s grit to grind away the simple affront of being taken for a boy. fraternal twins? don’t be daft. this was 1970, and, as mismatched as we were, she put shorts + short hair together and saw boys.

clichés about twins abound. how could i not grow towards and into the clichés too? we’re not joined at the hip, (cliché alert),  and yet when i look at him, i see myself – some aspect of me, looking back.

if you read the literature around functional abdominal pain, you will soon have a profile of a child – likely a girl – anxious, over-achiever, who (being a girl, note) is likely to catastrophise her pain or explain it in bizarre or emotional terms.  oh these resource-needy, attention-seeking girls, the literature worries.

i look at my daughter and think – is this her?

no. yes. no.

yes, anxious – but anxiety that has come as a result of the pain, not as its precursor.

it is interesting. functional abdominal pain has been described as a waste basket diagnosis. time and again, the literature points to a lack of understanding, the need for more research. i tell you what thrives in this vacuum – clichés.

maybe it’s because i write, or maybe because i’m a twin, but clichés – i can’t be doing with them.

***

quite by chance, and through this blog, i made contact with a woman in the US whose daughter has a similar diagnosis to my daughter’s. both have had abdominal pain since January (January!) that has severely affected their ability to function. schooling, hobbies, normal day-to-day activities such as going out and meeting friends – all disrupted or greatly curtailed.

in many ways, that is where the similarities ended and treatments diverged. in part, this is a reflection on two very different healthcare systems. our daughters have been prescribed different drugs. Citalopram, is used with good effect for children with FAP in the US, and being researched by the Nationwide Children’s Hospital, but is not licenced in the UK for this purpose. Medicines for Children returns no search results. both children are supported by psychotherapy – yet again approaches differ. one child is offered a tailored programme that uses biofeedback with breathing and visualisation exercises, the other child (mine) was offered a generic ‘pain kit’ which was woefully inadequate and has yet to begin any structured therapy. biofeedback will not be used.

today, our girls are going to connect on facetime and work through a visualisation exercise together. my daughter reckons she does not need it, but still wants to do this with her friend. she’s also not certain her pain has gone for good. they know, without having to explain, what the other is going through. it tells me that the child’s experience, their ability to work together as peers, and share and learn through this, is often overlooked as a key factor in helping recovery.

let’s see how it goes. i am quietly optimistic.

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8 Comments on “through the looking glass, across the Atlantic”

  1. Niki says:

    really hope this new ‘friendship’ works out for your daughter. My five year old had pains since she was three. Not to the extent she misses school but can impact on her day to day life. Is your daughter back at school now?

    • thanks, Niki. my daughter has started a phased return to school – summer term finishes in mid-July, so we’ve several more weeks to go. this type of functional pain is known to peak in early and late childhood – times of transition. have you discussed your daughter’s tummy pains with your doctor?

      • Niki says:

        I didn’t know it peaked in late childhood. Thought it was only early childhood. Great she is well enough to attend some school. Yes we went back and forth to GPs and eventually saw a gastroenterologist. After 6 months of explorations she had a endoscopy and coloncoscopy just before she turned four. Then a year of us ‘managing’ and then a return visit to this specialist who thinks she should see a child psychologist – which we hope to arrange soon. I feel so sorry for her as she is so young yet in daily pain or discomfort. Becomes a way of life. I think your daughter’s symptoms sound far worse than my little girl as it has stopped her going to school. Or maybe if my daughter was older she would articulate it in a different way and maybe miss school too. Instead I tell her she has to go to school and I think school activities distract her enough.

        • yes, pain absolutely becomes a way of life. my daughter was pretty much incapacitated by pain for months (couldn’t sit up or stand up unaided; couldn’t dress herself) – it’s only been in the last few weeks that we’ve seen a change – she had been making slow progress before then by goal-setting, but Gabapentin (a drug used to treat epilepsy) is what made the difference, and she is now pretty much pain free. we were told by our family psychologist that we had to be very careful we did not unwittingly reinforce pain as a way of life. that was hard. when you’re living through it, it feels impossible to break out of, i have to say, but it made me much more aware of trying to get my daughter to do as much as she could, gently, slowly, and making progress that way. pain such as this is awful for any child to experience or parent to witness, but it will pass. psychotherapy should give your daughter strategies for coping and reassurance too. keep in touch, i’d love to know how she gets on and all best wishes.

          • Niki says:

            I can’t imagine how awful it must have been for you and the whole family. Did she have many tests? Does she have brothers or sisters?

            Isabella’s complaints are impacting on her two year old brother who now complains of tummy pains at bedtime (just like her). It’s tricky because I’m testing him on dairy as he has had or may still have a dairy intolerance (diagnosed as a newborn) so sometimes I don’t know if they are proper tummy pains or he is just mimicking.

            I don’t know about you but I have found it very hard to understand how my daughter can be ‘normal’ in her gut yet be in pain. I don’t really understand functional abdominal pain to be honest and the back of my mind I’m still wondering whether she has some kind of food intolerance – although the gastro enterologist refutes this.

            It’s been a long two years for all of us.

            I really hope your daughter goes from strength to strength and can find a way through this. Poor love.

            • my daughter (an only child, btw) went into A&E in January with suspected appendicitis. i think we knew very quickly that it was not appendicitis (which worsens quickly), but she was admitted to hospital for observation. she had standard blood and urine tests, which were within normal range; she did not have a temperature; she had an ultrasound scan which scanned her ovaries, her appendix, and looked for fluid in the abdominal lining to rule out infection. subsequently, she had a stool test – again normal. that’s it. the difficulty we had is that she had localised pain over the appendix area – that did not change throughout all of this. we did not have confidence in the ultrasound scan – it only looked for very specific things and ruled out things such as appendicitis (no), ovarian cyst (no), infection (no). she was discharged from hospital in dreadful pain with paracetamol and a bunch of medicines to help irritable bowel syndrome (which we know she does not have as pain was not related to eating or going to the toilet). this blog takes you through the ups and downs of the next months. it was very stressful and difficult to be reassured. we focused on small goals – tiny things to begin with – but it remained a struggle as she was pretty much debilitated by pain. we’ve seen a dramatic improvement in the past month, after she was prescribed Gabapentin by a paediatric rheumatologist. if you look down the list of links above and to the right of this thread, you’ll see one called ‘Visceral Hyperalgesia’. it’s worth reading – it explains how and why some children are more sensitised to pain. 90% of the body’s serotonin is in the gut (i think) and treatment in the US uses serotonin reuptake inhibitors such as Citalopram to good effect to treat FAP. Citalopram is not licenced for this use in the UK though. my daughter takes amitriptyline (for pain relief and as a muscle relaxant) and that helps. she is a coeliac, but this pain has nothing to do with that. i’d really recommend that your daughter sees a clinical psychologist who can work with her on visualisation and relaxation techniques to help her push the pain away from her. has your gastro consultant suggested that? it might be worth keeping a note of when she’s in pain – does it happen at any time, or is it related to meal times or going to the toilet; is the pain worse when she’s upset? we’re facing other battles with my daughter, including tiredness and weakness – she has been almost completely sedentary for five months. it’s going to take time…

              • Niki says:

                Hello
                Thank you for your very detailed explanation. I’ve been reading your weekly digest and your daughter seems to be making some progress thankfully. Did they never want to do an endoscopy to take a look inside? We spent months agonising over whether our daughter should have one but in the end it was decided it was the right decision as her pain started when she was three and some of her blood testers showed some positive markers.

                And I’ve also been reading the links on visceral hyperalgesia and trying to make sense of it all. It is very interesting and certainly provides more information then any doctor has given us.

                The gastroenterologist has referred our daughter to a clinical psychologist and our first appointment is next week. I’m a bit skeptical as she is only just five so I’m not sure whether she’ll open up. But we’ll see – hope I’m proved wrong. We’ve never been told about any drugs and when we’ve asked we’ve always been told there is nothing available. It could be because of her age quite possibly. I will ask about visualisation and relaxation so thank you for that tip.

                By the way, do you know of any support group or discussion board for parents whose children suffer from functional abdominal pain?

                Many thanks

                • hi Niki – sorry for the delay replying, we’ve had a few difficult days here. i don’t know of a support group for FAP – and i found very little out there at all on this from the point of view of parents or children. i expected to find more as it is relatively common… my daughter didn’t have any other procedure other than blood, urine, stool tests and ultrasound (which was very quick and looked for very specific things – appendix, ovaries, abdominal lining). there was no follow-through from the gastro team either. all in all it was a stressful experience and i think could have been handled better, especially as my daughter was so badly affected by pain. it’s made me aware of how overstretched the NHS is.

                  i hope you have a good meeting with the psychologist this week and that it helps.


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