Friday, July 19, 2013

Conference: Day 1

From our Japanese children
The first day of the conference started with the Scientific presentations and, alongside this was the Caregiver Conference.  I am simply not able to report on everything (but there will be a report on the conference at a later date), so this blog will just be me talking about the things I have heard and seen.

Although the Scientific conference is always the first place you look to for any new developments, my first interest is always to do with how we can best manage and care for those with the syndrome.  Today I sat in on two of the scientific presentations that interested me, and the rest of the day was with the Caregivers.  The presentation "Can Oxytocin Help in Prader-Willi Syndrome" was of interest to me because of the studies being done to see whether oxytocin, in the form of a nasal spray, will help to modify "behavioural temper tantrums, perseveration, obsessive compulsive behaviours, manipulative conduct, sudden aggression and abnormal food seeking".  Thirty-one participants enrolled in the trial conducted at the University of Sydney, Australia.  Eight participants completed the trial with a lower dose; 17 participants completed with a higher dose.  The age ranged between 12 and 30 years and participants were selected because they had difficult or challenging behaviours.

Behaviours were evaluated daily by a primary caregiver:  hyperphagia, temper outbursts, skinpicking, obsessive and compulsive behaviours and under-reaction to pain.  At the end of each phase the carers also completed questionnaires about the individuals' general behaviours, sleep patterns, social skills and emotional liability.

After all the clinical trials were completed, the answer to the question, "Can Oxytocin help in Prader-Willi Syndrome" was, (and I quote) "No."

Apparently there were no differences noted in any of the above behaviours.

I guess this is disappointing since we all hope for something that will help those with PWS to be less ruled by their behaviours and become happier people, fitting into society.

After that, I sat and listened to part of the Caregivers Conference where a lovely young man called Aneil who lives in a residential setting here in the UK spoke with his caregiver about his life.  These are some of thing things he told us:

  • Know and understand me.  
  • Don't label me, I am individual.  
  • Listen to me and advocate for me.  
  • Prioritise the things that are important TO me and be realistic about what is important FOR me.


Somehow it always helps the balance of things to actually hear from the people we are always talking about!

.... More tomorrow!

Linda

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