taadaa shiny new gastrostomy support thread no.3 tube feeding support

[isitme1]

Taaadaaaa
Welcome to the new thread! !
New and old are welcome here

Could you go to your local hospital who should have a dietitian? Or ring the company who delivers feed eg nutricia, fresinius, abbott...
here they have emergency gastro nurses on call 24/7 never had to use them before (tbh I forgot about them)
I would put some diarolyte down until you get a clear idea. What oral juice can she have? Would probably try that too for calories (not much I know but better than nothing)
x

Hospital dieticians don't work weekends - even in the big London hospitals. Ours definitely don't! Called the manufacturer's out of hours line last night - they don't know (the product info is missing from their system; they can access everything else online but this one product.) Their best advice was to carry on giving the stuff till Monday. Yeahright.

You know, I think if I just put soya milk, a calorie boost and a multivit down the tube I wouldn't be 100 miles away from what she is getting anyway.

Its better than nothing.

Oh no red, what a fuck up, I would be livid!
Do you have a blender? I'd be putting some food down, something I know she can tolerate, how is she with pasta? Great filler, also baby rice not many cals tho.
Fruit is easy to blend.
Hope you get it sorted soon xx

Heavens that is appalling red! The dieticians are snotty about blended diet because it's not as 'safe' as formula

Like giddy says dilute baby rice with soya. Fruit purée from Ella's kitchen?

Gastro nurses? Are they on call at weekends?

It's horrible to feel you have done the wrong thing when all along thinking it was good for her and told its the right thing .

Red did you manage to get anything down her?
And most importantly did it stay down?

for all x

hope shes ok red how did you get on. just at the MILs only just got here and had enough already!

Hi all back from break... 2 days travelling and 2 days break with my favourite relatives It was brilliant to really talk to someone who understands. BTW it is my cousin who has adopted 12 abused children, we have only managed 8 with SN and there will be no more

Red it is appalling but like you I think our NHS is brilliant but sometimes things go wrong. Re blended diet many years ago we fed children blended diet in hospital and guess what they did very well!! BUT they were not fed oldsneeze's lovely food (hint hint) I hope things get sorted out soon!

DGD hope you are OK and your kidney problems are sorted out soon XX
How are my DGD send them my love.

Giddy do you think my DIL thinks like you

I am so vexed.

It might not even be the dietician's fault - if the data she's been given by the manufacturer is as dodgy as the data they have given their own helpline, she may not have had the right info. But tbh I'm not that bothered whose fault it is. I just what to find out what is in this stuff and how much damage it has done. And then find out what to give her instead.

And that's the really galling thing: they make it incredibly hard for me to find out, because the whole system works on the assumption that parents are morons who can't be trusted to make decisions about complicated technical things like what to feed their children, and so what to feed a child can only be worked out behind closed doors by trained professionals. Which might work in an ideal world, but here in reality the professionals are overworked and given duff info, which is why it's essential that you empower parents to double check for them.

Sorry red, Didn't mean to sound flippant. It is difficult and I am afraid it is a battle as they do think us parents are morons/difficult/stroppy. I find it difficult and I was "one" of them!
Hope things get sorted out soon. Good luck!!

Hey ho.

GOSH dieticians going to voicemail.

Manufacturer going to voicemail.

Manufacturer's dieticians in Ireland are on holiday for Paddy's Day.

Gah.

Ohh red. Has she been tolerating what your giving her?
If so I would leave a message on both and continue giving her what you have been giving (juice, soya milk etc) and wait for a call or try later on in the day

The formula may cause damage if it is given for a long time so it may not have caused any problems. Hopefully this is the case. Not knowing the ingredients and so on I'm not sure what to suggest, but would a pharmacist be able to look at the bottle and comment on any damage it may have caused, or suggest any blood tests to look at kidney function or so on?

I can get onto the british national formulary to look up contraindications but it may not be there as it's not a drug. I might still have the passwords for a drug interaction site

Lol 2old I sound awful don't i I should say that we go every week and it's the same every time! I'm left alone to look after the kids while MIL take DH off to do some odd jobs that need doing, like cleaning out gutters etc.

Hello all, I'm looking for anyone who can give me any suggestions/advice about bublar palsy. We have just been told my son may have this condition. We have searched the Internet for a help group and come up with nothing. He's currently being fed by ng tube and we are on a waiting list for the peg. Which can take up to a year! Has anyone gone private for this? Going insane. :-\

Welcome sxxbowen
sorry your having such a hard time. Where abouts are you? My ds was on waiting list and itbwas 8 months to see gastric dr. I went back to gp amd asked for referral to Sheffield children's hospital to see dr Thomson and choose and book service rang as gp wanted us to go local and I had a choice as they rang me. Dr Thomson knew we wanted to go there to see him and saw us within 2 days. He got his peg in a few months later aftertests and a long jhospital stay.
Worth a try? Google him he does private too. Dr mike thomson paediatric gastric dr.

What do you think of this....

Sxx not sure about anything private but I would look at your local childrens hospital or major hospital and the paediatric or gastro surgeon and phone their secretary to ask if they do private work. I suppose you can call bupa to see if there are any paed surgeons working for them.

I agree an ng tube is not satisfactory for 8 months. They are uncomfortable and add to the child's oral aversions. Sorry don't know anything about you DCs condition but imagine it gives him an unsafe swallow.

Isitme. Looks like normal stomach contents. Not sure of the context though. You could be teasing us with a syringe of orange juice

Its the same syringe full sneeze. Its been getting more and more florescent and hes been complaining a lot of stomach ache and pain in his bum
Hes on full dose omeperzole nd cant be increased as its a big dose

Sxx really can't understand that, Jay had PEG inserted in 1 week, he was 9 years old, Annabel within 3 days of video fluroscopy due to risk of inhalation and NG tube not viable due to very posterior cleft palate.
IMO bulbar palsy is a reason to put a PEG in quite urgently.

DGD Jay's aspirate is just like that and it stinks.

Hope all is well with you lot (how polite)

Granny hes been up the last week or so at night crying my tummy my tummy and last night it was my bum fire doesnt help when
1- I feel shit (headaches, uti etc)
2- night before it was his tummy and ds2 kept me up

think we all need a well deserved holiday ??????????????????????

Ohh and I posted the pic to 'brighten up' the thread lol its all words and no pics

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