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Gastrostomy/ tube feeding support group...

999 replies

Isitme1 · 03/06/2012 12:01

Hi.
I was looking for a support group for tube fed babies/ children but couldn't find anything.
Come and share you experiences and tell us how you are coping and how you felt when you first started with tube feeds.
I will introduce myself:
I have 1 ds- 21 months old.
Poor eater due to severe reflux and severe food aversion.
At his worst he was fed Baby food via syringe into his mouth like meds. He would take 60 mls a day in high calorie milk and a sip of water or juice in the day with no food in between.
He would scream at the sight of his high chair.

Fast forward a few months and he has a peg feeding tube. Hes on neocate advance ( suspected milk allergy) but have kept him on normal food to encourage oral intake. He still has very little by mouth but thankfully he's getting all his nutrients.
The gp put me down as a neurotic mother.
Ds is being seen by top gastric paediatrician.
He's having gut motility checked as his food is still
In his tummy 10-12 hours later and comes our undigested.

Hes had meningitis and septecmia at a young age too.

Come and introduce yourself!
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gallivantsaregood · 29/08/2012 11:23

Thanks Everyone for the birthday wishes and the flowers Smile. Ds even made me a card in school yesterday :) And the one he chose fro the shop for me had me in fits of laughter this morning. Wonderful way to start the day :)

Peedles: The farrel valve will need to be higher than him to work.The pump itself won't but the farell valve will. We have used these in the past for DS. Can you ask your local CCN to arrange an I.V. pole for you? You can then attach the pump and farrell valve to than andit will be far more stable. Can I just check what length of extension set you use. We always use the 24" ones which gives a bit more tube length and prevents pulling etc.

Isitme: I would complain about your GP!!! If a referal should have been made why didn't he make it then?! Of course I will check your letters for your :) As for your 'D'H he is being a bit of a child!! Grrr on your behalf!!

Willow: I am always amazed when I hear of children actually drinking Neocate. I accidentally tasted it once and it took hours to get the rotten tase out of my mouth. Fouls is an understatement. Hope everything works out ok for your LO. Don't worry about the tube. I think all childrne should be born with one Wink. Your LO will start to grow and thrive and I bet in a few months you will wonder how you ever managed without the tube. xx

Hope today is a good one for all xxx

OpheliasWeepingWillow · 29/08/2012 12:37

Argh! HELP

So they put tube in. DD had hysterics so it took ages. Immediately she pulled it out. They out it back in. Hysterics. She pulled it part out. Hysterics. They taped it basically to her entire face and she fell asleep sobbing.

They put 120ml through tube. She wakes up. Gags. Throws up everywhere. Hysterics. Tube falls out!

Is this normal

Have refused to have the tube put back in tonight and she has had 5oz by bottle.

What now? Other doctors in my family say just take her home and bulk up her formula.

??? Confused

OpheliasWeepingWillow · 29/08/2012 12:40

I mean she just had a 5oz bottle of Aptamil. Today she has had about 19oz which seems a normal amount? Confused

If there was a head in hands emoticon I would be using it

bigbluebus · 29/08/2012 14:00

Can anyone tell me how they 'wind' their DC's PEG/tube.

DD has been tube fed for 5 years, but has never suffered with wind, so it is not anything I have ever needed to do or shown how to do.

She has been a little unwell for the last few days and as I sit here now I can hear her tummy gurgling big-style!! It may be the anti-biotics that she is on - but there are no other side effects at the moment!! Just wanted to give the tube go and see if I can release any wind!!!

Thanks

Isitme1 · 29/08/2012 15:04

Has she got ng tube?

The milk rate may be too much for her. Ask them to slow it down.

Bless her
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Isitme1 · 29/08/2012 15:07

Bigbluebus
Welcome
Attach an empty syringe to the tube and open the clamp.
If ds has wind it should come out or attach a normal syringe And 'empty tummy' by pulling back on the plunger. If dc has wind it will come out like that too.
Hth
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bigbluebus · 29/08/2012 15:13

Thanks Isitme.

DD has a Mic-key button. Milk rate is very slow - has been the same for 5 yrs.
I think the problem is either the anti-biotics she is on or the amount of air she has been gulping in due to gasping in pain - possibly with a sore throat - although she cannot tell us - GP just thought it looked a bit red!

I will try attaching an empty syringe and see if that helps - gurgling might just be reaction to AB's though, so may not help

starfishmummy · 29/08/2012 16:03

Gallivants - your comment about all children should have tube made me Grin.

Before we had ds, DH's brother and his wife were expecting their first baby and we bought them a cartoon "how to be a parent" book. The cartoon that stuck in our mind was one showing the baby "plumbed" in at both ends - to feed it and deal with the nappy end!

So DS has the feeding tube, we just need the one for the bottom end!!

2old2beamum · 29/08/2012 18:32

Wind!! no need to vent DD she farts for England even the builders were shocked
I was a little concerned they thought it was me (no not Isitme!)

Isitme1 · 29/08/2012 20:37

Lol Granny Shock
Are you blaming me lol
Who ever smelt it dealt it lol
really showing my age doh

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2old2beamum · 29/08/2012 21:14

Grandaughter GrinGrinGrin
It was not me

Minky66 · 29/08/2012 23:05

Believe me, I know 2old2beamum, and I can guarantee, it was her!!

NinePeedles · 30/08/2012 14:07

willow , How are things today? Perhaps your dd picked up how negative you felt about her having the tube. What age is she?
We have a great team of experts supporting my ds's needs, and I trust their judgement regarding medical matters.
isitme how are you today? I hope things are a bit brighter for you.
gallivants hope your hospital visit went well.
We now have a full length I.V. Pole to try, thanks for the suggestion. His tubes are a good length but he hauls them in like he is pulling up anchor!
Hello bigbluebus . Hope your windy problem is resolved.Smile !
Hope everyone is having a good day!

2old2beamum · 30/08/2012 15:11

Oy Minky66 It was not me Just remember I know what you did to your poor little brother when he was only 3 you wicked wicked girl GrinGrin
How is every one
Glad you have sorted your tube probs out Peedles IV stand is a good idea however son did manage to pull his over but did have 2 IV pumps on it----we then tied it to the bed. BTW we have feed extensions.
Bigbluebus hope your wind has gone!
Grandaughter hope you and DGGS are ok xx

Isitme1 · 30/08/2012 19:16

Peedles it's another bad day. Remembering what I went through 2 years ago.
Need to snap out of this.
Going through it again in such description. Bloody hell.
How are you peedles
Granny how are you?
Ds is doing good. He's got paed appointment tomorrow, going to ask for open access.
I do think he's got a bad gut as when he was born he was allergic to breast milk. When ever I fed him he would come out in nasty rash every where. Not an official diagnosis though.

Hope everyone is doing well

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bigbluebus · 30/08/2012 19:29

Hi all, the gurgling does seem to have stopped now thanks!
Think it may have been the anti-biotics causing it though!!!

Isitme1 · 30/08/2012 20:42

That's good to hear!
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2old2beamum · 30/08/2012 21:48

Grandaughter glad things are okish XX for you and DGGS
Granny is ok, busy w/e ahead. DS3 (home grown) & DIL are coming to put flowers on DS's daughters grave have (she would been 13 tomorrow no longer with her mother) so I think it will be a bit traumatic. Fortunately our best friends are coming on Saturday, they too have lost a daughter so will understand. Their lovely DS was our DS's (who died) girlfriend decided to die on his birthday spooky.
Saturday is DS5 birthday so for him we will celebrate Smile
Love to all XXX
WHAT A MISERABLE POST!!!

gallivantsaregood · 30/08/2012 22:00

Willow: Sorry I didn't relaise it was an NG.....they are horrible but hopefully she will get used to it. PEGs are definitely better for avoiding oral aversions etc. Would they consider a PEG. DS had an NG ( and NJ) for 5 years before getting his PEG. If you need a hand with taping tips I am happy to help. Sometimes the way tey tape the tube to the childs face actually makes it even more annoying and therefore they will pull it out! Hope things are better today

Peedles: Hope the I/V stand works :)

Isitme Thanks for you, a Brew and lots of love xxx

Bigblue: hello and welcome. You do know you need to be mad to join? it's a requirement for entry to this group Wink

bigbluebus · 30/08/2012 22:09

I think I probably meet the criteria!!! Lol

2old2beamum · 30/08/2012 22:26

Bigbluebusne just to let you know I am the only sane one on this site only
Galli is perhaps less daft than the rest You have been warned Grin
Due to advancing age I may well have dementia like sneezecakesmama who has a wealth of advice.
Seriously this site is brilliant Thanks to Isitme

Isitme1 · 30/08/2012 23:03

Aww granny will have a house full.
Hope the day(s) go smoothly.

Bigblue
They are right Wink

Thank you gali.
How did everything go??

Hope everyone is well :)

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gallivantsaregood · 30/08/2012 23:14

Sorry forgot to post about that......Cardio appt was great :) DS doe shave a very slow heart rate for his age but the rhythm is normal so no need to worry. Also re the aortic stenosis, just seems he has a high risk of developing it but shows no signs yet. If he gets to late teens without it he shouldn't get it . To be reviewed in 2 years Yipee. One less appointment next year. :) It may only be one less but it's one in the right direction.

I am a very lucky girlie ( well oldie no I suppose since i'm now 40!!) Had a lovely birthday dinner last night with family. Bit of disaster en-route due to motorway closure and what is usually an hours journey took 2.5!!

Was well worth it though as I had a lovely time. Also got really fabby fabby gifts. Black patent Doc Martens from my sis and a Kindle Touch 3g plus case with light from my mum and Step Dad ( have spent this evening working out how to work it and have downloaded 10 books already)and Amazon vouchers from my Dad - Read-fest coming up for me Smile. My friend took me for a day out a few weeks ago and we went ot the theatre, out for dinner and cocktails and another friend sent me a lovely shoe mug with shoe biscuits ( have a bit of a thing about shoes - and none of them with high heels. I'd break my neck.) (Whispers) I even have a shoe cupboard GrinGrin I am a very lucky lady.

However the best present of all was DS's continual checking yesterday that I was having a lovely birthday and his smiles and hugs AND the fact that he was well and not in hospital. We usually spend important days in hospital - bit of a tradition....lol.

Well that's all my news. Happy Friday tomorrow for everyone. xxx

P.S: 2old: It's nice you think I'm not greatly mad, hope I can live up to your expectations though....... Smile

Isitme1 · 30/08/2012 23:30

Aww bless.
Sounds like you had a lovely day
very jealous of the shoe cupboard

Hospitals +important days= disaster.
Let's hope this time round everything is well!
I want a pair of the doc martens or a pair of ugg.
Ugg look cosier and the doc martens look all weather,
If the doc martens had the lining of an ugg wow
They would be instant sell out!!!

I don't want to pay £150+ for a pair of shoes that I can't wear out in the rain lol.
I do a lot of walking still got big arse though and I need something comfy , warm and weather proof for winter.
Personally I don't think there is such a boot.

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Isitme1 · 30/08/2012 23:42

This is what I want lol
ugg boots

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