I have to tell you this, and ask a question.

We had our appointment at the hospital on Thursday morning, and to be honest, I was disgusted with the guy we saw. With all of Tabitha's issues, I like to see the people I know with her, so I now they know her background and her issues, and I went up to Out-patients expecting to see her Surgeon. We actually saw the Registrar. Who knew nothing about Tabitha, her syndrome, her history, and suggested a totally inappropriate regime to cure her intermittent constipation problem. At that point, I kind of switched off to be honest, which is not the best thing to admit, but when I know what works, to be told to increase the medication by a factor of 6 and then titrate it down (with the guy explaining to me what titrate means, if he knew me at all, he'd have known that was a major part of my old job). My word, if I upped her medication x6, she'd explode!!!!!

So, there I was, listening to this guy telling me what I consider to be the biggest load of rubbish, for him to look at Tabitha's rather substantial notes, and then suggest that she be tested for Cystic Fibrosis. Ok, so from nowhere, you have linked some constipation and vomiting, to oxygen dependancy, and come up with a potentially life threatening and life limiting condition. Given Tabitha's long term relationship with the Respiratory Professor, and the Gastroenterology team, and her full genetic screen (which showed her deletion fully, but failed to show any other anomalies), to suddenly suggest this sort of disorder is completely inappropriate. Another mum may have been completely freaked out by this suggestion. I shot him down in flames, told him her genetics showed nothing of the sort, and waited for the next shot. He then went on to tell me how busy the Surgeon was, and how he would speak to her, and if I could wait 30 mins he would tell me what she said. I decided I couldn't wait that long, and I'd rather receive a letter telling me what she said, as a way of getting the hell out of there.

I am still pondering what to do. This guy seemed to know next to nothing about what he was telling me, and I'm worried that could be dangerous to someone. Do I take it further?