Jaqui Reid

You could try downloading some of Andy Wakefield's research and taking it to you GP in the hope he will refer you to the Royal Free in London. The only problem is that I believe they are currently making appointments for next October and there are so many people on the cancellation list they aren't putting anyone else on.

You could try to convince you GP to do a plain abdominal xray (he can refer you directly to the hospital for it). This would show if there was any bowel impaction - this is a common cause of abdominal discomfort and Andy Wakefield is finding it as a common problem in his patients so far. The protocol the Royal Free are using to clear any impaction is 2 weeks of mineral oil or liquid paraffin followed by administration of a bowel clearance preparation called 'Picolax'.

Another test your GP can request is a faecal calprotectin level (again he can request this from your local lab & all you do is collect a stool sample). Calprotectin is a stable peptide in neutrophils (a specific sort of white blood cell which is produced in the inflammatory response). If there is a raised calprotectin level then this indicates inflammation is active somewhere in the GI tract and should convince your GP that further investigations are required.

On the up side the team at the Royal Free currently have a proposal in front of the Royal Society of Paediatric Gastroenterologists which is due to be heard some time soon. If their proposal is accepted autistic enterocolitis will be accepted as a defined clinical condition with a protocol for diagnosis - this will then allow referral to be made to your local paediatric gastroenterologist so keep your fingers crossed.

All this said I have been trying to get my GP to refer me for these tests for over a year without success. I am currently trying to find a gastroenterologist to see privately who might do some of the testing for us - I'm hoping if we go private they might take the time to listen to us.

Get back to me if you want some links to Andy wakefield's research.

Jaqui