been upset most of day told our dd posturing is not reflux so had the bl''dy operation for nothing

[trace2]

been to see the gasro pead today ours was not there so saw a diffrent one, and when we told her after fundo op shes had an episode lasting 12 hours she asked what happens then she says it dont sound like reflux to me, and it carnt be as shes had an episoes since op. we told the other pead time and time again it was not reflux and showed him videos of her, why didnt he listen i know feel like we put dd through a masive operation for bloody nothing.

and we still dont know what dd is doing or why, the amberlance men say they never seen any thing like it. i am losing my trust in the peads

sorry about spelling lol and my typing also was told if its cp dont be surprised if wnen she puts weigh on she may not walk as good or not at all. and she is getting unsteady and jittary and v tired easly

Trace, it does sound as though suspicions of dx have been written in medical notes without being discussed with you. I would be very annoyed if that was the case.

Can you request a mult-disciplinary meeting be called where all the professionals involved can be open and honest with you - even if they cannot agree on a definite dx, at least you will be 'in the loop'.

I really hope you do get some answers. How frustrating

ejb1976 - your DDs turns sound like low blood sugar, esp the cold and sweaty bit. We are constantly on the look out for another drop in DSs and that is one of the signs. Also twitchyness/jitteriness.
Peripheral circulation can also suffer too, may explain the colour change in her arms?
Have you got a home blood sugar monitor? If not, please press for one.
I'm glad they are investigating metabolically - though it is very very difficult to find anything wrong unless something is missing IYKWIM. Steroid/hormone levels are very difficult to prove abnormality in. It took weeks and weeks of DS severely dropping BS before they found any clue (lots of red herrings lead them to the wrong conclusions, nobodies fault, that's how hard it is). That clue was a very low cortisol level, but it had been measured so many times and it had always responded aprropriately i.e. increased when it should have, but at a level much lower than average. This is a working hypothesis (correct IMO) as it is quite plausable that another individual could function perfectly well with DSs levels - they are just too low for him. It is really hard. They may have to repeat them time and time again.
I mean this in the nicest possible way, but I hope they find something to explain it. It's very worrying, I know.
Trace second NMC and others that it sounds like it may be a seizure Just coz Dr has never seen anything like it before, it doesn't mean it isn't . Can you get a second opinion? Poor baby, I really feel for you