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[Guest guest]

Hello Everyone

I wanted to have a vent about our latest GI appt (yesterday). It was

incredibly frustrating!!!

Finlay had the Gastric Emptying test done last month – the appt

yesterday was for us to discuss the results.

We had insisted that the GI contact Dr H prior to going ahead with

the test – he assured us that he had and that her protocol did not

differ at all from his. We had several emails back and forth – with

him getting more and more heated! In the end we decided to go ahead

with the procedure and just cross our fingers that Dr H had in fact

been consulted. We were suspicious that she had not for several

reasons – the test Finlay ahd only lasted 60mins (we know Dr H's

protocol is for the child to be under the camera for 90 mins) – and

the drs had no way of addressing Finlay's hypoglycaemia – it was at

our insistence that he did not fast for the 8hrs recommended – he had

clear fluids (gastrolyte plus glucose) until 3 hrs prior to testing.

The Drs we were dealing with did not consider it necessary to use an

IV. We checked Finlay's blood sugars carefully and he was fine.

Anyway – yesterday we were told – Dr Harbisons protocol did not

arrive until the day after the test – although the Drs had insisted

that they had a copy of her protocol at the time!

So the results we have are inconclusive….after 60mins just less than

50% of Finlay's stomach contents had emptied – apparently the margin

for error is at least 20% in either direction = so we don't even know

if Finlay has mild or severe DGE.

The Dr ahs agreed to sent these results to Dr H for her comment. But

he believes that the reason for this test is purely academic. All it

tells us is that Finlay ahs DGE – which we already suspected – the

results of this test do not inform treatment or intervention

protocols……I find this very hard to believe.

If your child has had this study done – can you tell me what

difference the results made to his/her treatment/management.

As you can tell we are incredibly frustrated….this is the same Dr who

was all set to do the gastroscopy under GA until Dr H intervened at

the 11th hour and as a result the test was deemed unnecessary and

cancelled.

grr grr grr

Thanks for reading! It feels good to have a rant to people who

understand!!

New Zealand

Finlay - 4yrs, RSS, g-tube, cisapride