Peg Feeders: anyone experiences of the home delivery systems for the feeds etc?

[meltedmarsbars]

Any advice, good, bad or otherwise?

is it Homeward you will be using?
we've found them pretty good, i get it delivered to my mums as im never in, always comes regular as clockwork, never had anything missing altho once we got some extra stuff that was meant for someone else but they came and got it the next day

Failed to deliver any food at all - just the giving sets, no food. "Out of stock" when my dh rang next day.

what food is it?

Not a commmon one apparently - and this happened after I got the stocktake message which said that if I didn't call them back by 3pm they would postphone the delivery! I did call them back and did the stocktake and they still sent no food!

its just i have about 10 unopened boxes of nutrini pepti that got delivered before christmas, just as we changed to nutrini energy!

Nutrini low energy multifibre which I then have to mix with other stuff.
Is it only me that gets left high and dry? Its not like the local chemist will have a stock for me to use.

ah nutrini pepti is the 1.0cal/ml predigested one, we changed to the 1.5cal/ml energy but add 45mls of calogen as well

We have some pepti too, for when we had baaad stomach problems.

yeah thats why we got it as we always thought he had a milk protien intolerance but he wasnt gaining enough weight so we tried the energy and hes been absolutely fine!

well give me a shout if you ever need some more pepti....can deliver!

loads of nutrini energy multifibre going here if anyone wants

ooh we might be trying that next to see if it'll encouarge his bowels to be a wee bit more generous...shame you're totally the other end of the country!

oh I don't want to piddle on yr bonfire but hasn't been of any help for dd on that front. She's recently been hospitalised as a result of complications from chronic foecal impaction

Dieticians somewhat baffled by this - rather the opposite effect to what they expected.

It made her so so windy. Have swapped to regular nutrini energy and masses of movicol instead

Hope you fare better

ah might not bother then!
ds has made an art form of doing the opposite of whats expected, so if the dietician thinks it'll help it probably wont!
she also thought the calogen might help loosen him up as it gives most kids the runs but its done heehaw bowel wise, think i'll just stick to the old faithful sodium picosulfate!

Cant use any high carb feeds here - fat absorption only.
On the bowel front we now use with the higher fibre feed plus lactulose plus movicol and by balancing all these manage to loosen "blockages" - what a lovely subject!

Riven - I don't know Fresnius. We were also threatened with ketogenic diet because it prevents lactic acidosis, but have so far avoided it. We use Ranitidine daily for the vomiting.

A friend of mine had to do ketogenic with her orally fed child, for the same epilepsy reason, she found it very difficult.

meltedmarsbars - has yr dc got metabolic probs? DD has high levels of lactates and is v acidic post hypoglycaemia. Is that the same thing as lactic acidosis? Most likely dd has glycogen synthase deficiency. metabolic docs based this on the hypos and lactate levels

I haven't got a clue what I'm doing feed wise really. Stuffing her silly and constantly and coaxing out poos!

Pixie, mine has PDH, which is a metabolic thing. Your thing sounds rare!

Sound like even though our dc's all have very different underlying conditions, some of the by-products are similar!

Riven - my dd's high fat diet is because she doesn't metabolise carbs, they end up as lactic acidosis, and the bowel probs are made worse by severe hypotonia even in innards! I can never get the balance right of lactulose, movicol, benefibre, etc...