Gastrostomy/ tube feeding support group...

[Isitme1]

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!
X

DS has a balloon button. Yes they can fall out if the balloon "fails" or the button gets tugged (usually when attached to the feeding pump). To put it in perspective ds has had his for almost 11 years and it has probably failed about half a dozen times. When he first had it, his only method of movement was rolling over and over on the floor and it survived that!

Once a week (or whatever the protocol is in your area) you change the water in the balloon by putting a syringe onto a little valve and drawing the water out - if there is none there or a lot less than you put in, then it is possible the balloon has failed and needs changing. In our area the protocol is tio change a button every 3 to 4 months, but we have gone a lot longer than that.

Changing a button is relatively easy - I do most of DS's myself; sometimes the school nurses do it if it looks loose, and once in a blue moon I ask the community nurse to come and check the measurement (they come in different lengths).

Congratulations!
Worrying is what grandparents and parents do best!
Hope everything goes smoothly for everyone!
Ds is in theatre ATM
They have changed it over and they said he has irritation on the inside and that's why there was blood.
He's doing good and should be in recovery soon

Hope everyone is well
X

Xposted again
Thanks for the info.
He always pulls at his line when he's feeding. Grrr will have to find a different way I suppose or keep him better occupied.

X

Isitme. holding virtual hand

I'm sure DS will be fine its a very quick procedure and straightforward. Hope he is OK. I suppose he will have to stay in a day or two to reestablish feeding.

Wow they got him in quick! He should be all done and snuggled up with you by now but it is horrible waiting. You can tape extension sets to his nappy, clothes etc which should help with the pulling at it.

Isitme sorry not replied earlier, my positive vibes however have been with you hope your LO is ok and settled
Busy day here DS several siezures, dd very grumpy found temp 38.9 off to a wedding tomorrow still have to shorten DS3 trousers aarrgh.
Love to you and LO also to all Senile mumsnetters regardless of age

Within about 10 very long minutes his consultant came back to me and told me everything had gone smoothly and he was still in theatre. The other side of his tummy was irritated and it was possibly because of the disc of the peg on the inside that had irritated him.
He wouldn't let me to near him to put extension set in but today I think he's understanding that he needs his milk from it. He has been in a bit if pain. He's also getting slight temp but he is cutting a few teeth too [grr]
He woke up all happy and smiley while I wanted to sleep but that's kids for you!

2old hope ds is better today and you have a nice day at the wedding
X

Tooloud I'm happy taking the extension set out I think as he's letting me do so which is brill

Senilesneeze nope we ran pump there and it was going through ok and they sent us home --I would of been happy to stay so I was given full care instructions but they were shite at giving clear instructions last time and it was the milk delivery nurse and dietician who explained everything

Hope everyone is good
X
X
X

Just seen a video in YouTube on changing the button.
Thank god it's not a major thing!
I understand it a lot more now.
massive sigh of relief
x

Glad it's all gone well isitme and LO is home safe complete with button. Totally mystified re buttons . But sounds like a good idea just hope things sort themselves out now!

A question for anyone but to do with reflux. DGS has put on weight and shot up in height (which he always does with a few extra calories). We thought we had cracked it as getting 120 mls fortini at a time with no vomiting, but lately putting it down the tube he is puking most of it up, either immediately or 10 minutes later. He's not ill but if he's laying down its as if the fluid just comes straight back into his mouth really easily. Obviously we feed him in a sitting position, but still vomits easily? He's never officially had reflux and is not distressed with acid. His dad and grandad both suffer with reflux and are on meds for life so it might be nothing to do with CP but he is weak in his trunk. He's always been a major pukey kid. Would ranitidine stop vomiting? Maybe an anti sickness drug? I suppose it needs finding out why but would not be keen on a fundo. We thought stretching his stomach slowly would stop this but it seemed to be working but not now. Sick of multiple clothes changes!

2old. Hope DS has stopped fitting it must be awful for him and you all, and enjoy your wedding. Life goes on thank goodness

I'm almost a reflux expert :)
Hmm sounds like he needs domperidone to help empty tummy so he's sick less. Fundo is the last thing they do.
Ask your gp for gastric referral.
They may suggest barium swallow and take it from there.
Defo no lying down for an hour after feeds. No jumping or juggling of the stomachm

I think the anti sickness helps with just not feeling sick rather than not being sick but yep Defo needs mentioning to gp or his general paed
X
Hope he gets over this soon its bloody horrible!
Hth
X

Hi. He's always been sicky but not distressed by it so no pain. Just puke and carry on! But not just a small amount sometimes all of it sometimes half. I suppose he is under gastros as he has a PEG but we don't see them at all. I'm really confused by this too.

He is doing well with eating. That doesn't come back it's just the volume with fluid. But I think those bigger volumes have stretched his stomach making him actually hungry so we don't want to go backwards. It's so confusing as when he was (we think) growth spurting he accepted 150 mls or more and no puke. DD may ask the GP if it's possible he needs meds. First talk to the gastro nurse for advice as its their field and gps are not experts with cp.

He is actually opening his mouth for savoury dinners so we want to hang on to that progress as it may mean the peg comes out in the future.

You could ask to see the gastros who is dealing with peg.
It might be when you over fill him. Try giving 15 mls less than what your giving him but make up for it later. So if he has 3 feeds of 150 mls give 135 x3 and get a small amount of 60mls in some where in the day. It might throw him of track first few days but it might help...
That's brill he's doing that!

I love it when Los are like that, we had a little boy over yesterday and he loved his food. He ate everything we give him might be exgagerating as I miss feeding a child so seems like more to me
2 old hope the wedding went good
Tooloud hope your ok
Sneezecakesmum hope you dd and dgs are all well

X
X

Glad things are going well Itisme with the button. We did use a Mickey for our son who died but it the balloon burst due to very acid stomach acid on a very regular basis Do not worry he had multiple problems and finally had his stomach remved and still managed to be sick.
Senilesneeze and youngsneeze hope is all ok and the knitting needles are flicking.
Tooloud I think I will have to admit you win over number of children (I have cheated) I can give you some contacts if you like! Us we have locked all doors and lost the keys xx

BTW wedding went fine all behaved even me
Have just read a previous post I wrote---am sure tou have gathered I was not a pretty little secretary sitting on my bosses knee by my typing

Senile1 im very glad the wedding went well glad you behaved too
He's letting me attach the extension set so I hope he realises it doesn't hurt. Well I hope it doesn't hurt!

I only have the 1 but I want more. Lots more!
Dh won't be able to keep up lol
If he was here I would defo be up the duff but he's not so have to wait a little longer...

Lots of love from
senile2
X

Glad wedding went well 2old and button is being accepted isitme. Sneeze does sound like reflux, there are plenty of meds out there that help so worth following it up. Gastrostomys can make reflux worse sometimes as hold stomach in one place so it doesn't move as effectively.

We are finished having babies now (never say never as we have been surprised before) ds condition is probably genetic which is a factor in that decision. I would love to adopt, Dh doesn't think he can.

Thanks for info tooloud. We will look to reduce the volumes and have a word with gastro nurse in case he needs medication, I guess anything is worth a try. Off to sunny / rainy Norfolk for a couple of days to see family.

Hi Sneezecakesmama you will probably find a rainy Norfolk, actually its not too bad. If you see a grumpy old hag about it will be me. Off to watch Usain

The weather has been really mad here!
Thunder and lightning and hail mixed in 1 followed by sunshine
had to convince myself not to hide under bed!

X
How is everyone?
X

Hellooooooo
Anyone there???
Sneezecakesmum hope your trip goes well

How is everyone. X x

I am well but knackered hope you are well

love to all

I'm in the same boat!
How are the dcs
X

Salt has been. She was very pleased with ds progress.
She is slightly worried about autism but she said at this moment in time only time can tell has he has been ill and that can delay everything. The dummy is out too now so that is also another good thing to help motivate his speech.
She said we will see how he goes on in the next few months.

Helllloooooooooooooooooooooo?????

X

Bump!!!

Hi all. Had a lovely time in sunny (mostly) norfolk. was sat on hunstanton beach with lovely extended family this morning, even the breeze was warm. it was heaven. May have seen 2old on the prom! back home DD has 3 appts for DGS tomorrow!!! Oh well back to the grindstone! Isitme. fingers are crossed for you re the ASD query, you dont need that to cope with on top of the rest! Speech is helped by chewing food, so if your DS wont eat that will delay speech. DGS has no teeth so there you go too in the chewing stakes! He loves his cousin and laughs like crazy at her. Made me laugh by spicing up their ball game by hiding it under his legs and looking innocent! Feet in the sea and hands in the sand - just like any toddler, lovely!