I have a question for you all...

[J-Jo]

if he is responding to meds i would be happy to hold off a redo. is it mt that you see.

they can do an endoscopic fundo now witch is less invasive.

also i would be feeling the same as you about the tube, i think we get the safe feeling knowing we can rely on it. especially if you still use it for medication.
i cant beleive they said it doesnt count i know someone who uses theirs for fluid and meds for encoperisis.

i hope you can find an answer.

[Twins plus Two]

It WAS MT we saw, but he's passed us back to the paed now after I had a moan because he kept getting muddled about info and made decisions without reading the very studies he requested. He did say an endoscopic fundo (which he pioneered) is not appropriate in children?

[J-Jo]

i dont rate his clinic. we have supposably been under his care but we are yet to see him professionally. i have heard of more than one person that he has been arrogant about doing tests and often forgets things. he spends more tie private these days i think.

he was raving about the endoscopic fundo at the medical conference. and that was based on children so i dont know why he didnt reccomend it.

[Sams Mum]

Kate, this is a tough one. I remember feeling jealous of you earlier in the year because you had the tube option to get Movicol in, whereas I don't. My question would be: isn't there another type of med that would sort out his constipation, but that wouldn't need to be taken in such large volumes as the Movicol? At the moment Sam's doing well on a combo of Laxette (a stool softener that I just add to milk - slightly sweet, but huge volumes not requred, and is even safe for tiny babies) and Benefibre. He was also a stool holder, but has suddenly come right - it's a big relief. I reiterate my view that your medical team really seems rubbish. They don't seem to care, or have your children's best interests at heart. But maybe Archie will surprise you, the way Sam did for me.

[Amy]

I would think for any half competent dr that is would be a decision easiliy made, Is the tube stil being used for ANYTHING yes it is then leave the dam thing there, Its obvious that the tube is stil serving a purpose it is being used to get his medication into him, so he needs it until he is going to take the medicine him self, It really is a no brainer

[Twins plus Two]

Well put Amy. Have had a long think about things today and I have decided I am going to take a firm stand on this one. He CANNOT be taking 600kcal in Neocate when he needs his extra Movicol just because that would be the only way I can get it orally into him. It's madness making a newly happy eater back to a reluctant one!! I just do NOT see the logic? You can't reason with toddlers and I really am not happy about this. Also, it would seem more fluids alone are helping, at least a little.

Thanks, al!
Kate x