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

Hi Everybody,

Sorry for disappearing and sorry i haven't had time to catch up yet. Our 1st foster placement arrived a cople of weeks ago and she is an ickle baby. Have been so busy with her and with Ds's routine that I haven't managed to geton here.

Just wanted to let you know I am still alive and well ( just exhausted but happy) and will be bakc soon, I hope.

In the meantime, hugs to everyone who needs them and hope you are all having lots of love and laughter. xx

Hello everyone,

I need to tell you because only you will understand this;

My little star ate a whole slice of toast for breakfast today! I can hardly believe it!
This follows a night off his overnight feed. He is proving them wrong. I am so proud of him.

Galivants welcome to my world. The first couple of weeks may be intense, but you will soon settle into a new routine. Good luck for the future!
isitme I have been wondering how you and yours are, now that you are reunited. Hope all is well.
To everyone else, hope all is well for you and yours too. I can only drop in from time to time, but like to catch up on your news.

Galli. Sounds very exciting to have a little baby to care for. DD is about 14 weeks pg now so getting more real! She had scans which picked up an increased risk of pre eclampsia but not too much to worry about just monitor atm. DGS has a nursery cold kindly given to DD and me! He pukes all the time when he is snotty so it's a puke fest here.

Nine. Brilliant that DS is eating something. Makes you feel there is hope one day the tube can come out. DGS is so pukey at the moment, it's so frustrating re the feeding, though he was pinching DDs toad in the hole . For him it's so much effort to use his hands to feed himself he can't be bothered.

We are off to Brainwave next week , so hope DGS gets a few gold stars.

Hi,

I'm new to the board and after a bit of support and advice as i'm totally clueless about tube feeding!

Dd is 22 weeks old (9 weeks corrected as was born at 27 weeks). She is having trouble with growth (off the charts for weight and length) and her paed has said that she may have to have a ng tube for a few weeks to help with this. She mentioned about 12 hour tube feeds overnight. Dd will be seen again in 4 weeks time and a decision will be made then.

If she is being fed for 12 hours will it be with a pump and is the pump easy to use? I'm a nervous wreck at the thought of dealing with a tube at home so would love to hear other peoples experiences.

TIA
x

Hi Chunky.

If they are going for a 12 hour overnight feed it sounds like it will be with a pump and they are easy to use - make sure that someone shows you how to use the one you will have at home; when ds was first sent home with one, we found the ones supplied in our area were not the same make as the hospital used!! They are all easy to use, but different!! I expect you will also get visits or at least access to, a childrens community nurse (CCN) to help. Unless you have been taught (and are willing) to replace pulled out tubes at home yourself then you need to know that there is someone to call on if needed.

We didn't want to change the tubes ourselves at first, but gradually realised that doing so was the easier option! With a young baby you can swaddle them to keep hands out of the way while you do it; BUT don't think you have to change it yourself, the ccn should support you if you don't want to.

Oh and welcome to the world of having boxes of tube feed supplies all over the house!!

Welcome Chunky,
The pump is really easy to work, so don't worry! In our case someone from the pump supplier came to our home to show us how to use the pump because the hospital DS was in was not in our area and our area used a different one.
We had to learn how to replace a ng tube before he could be discharged, but we were fine with that; it is a lot more convenient to be able to do it yourself.
You will have to find somewhere to store all the supplies; we get a delivery once a month.
Good luck, I'm sure it will be fine, and the main thing is your little one will thrive!

My DGS was not on the charts weight wise for 3 years, but was for height, so you can imagine how skinny he was

He never had an NG tube, it would have been out in seconds, but had a gastrostomy. Not nice, but within weeks he was on the chart, and it was the right thing to do. Hopefully one day it will come out as he can eat and swallow, just not enough!

The overnight feed is brilliant, the pumps are easy to use, and the calories just drip in quietly and chunks them up! You will probably find that once your DDs weight starts to reach more normal levels and height too, her appetite will increase and she will really take off, and the tube can come out

Thanks for the replies. I feel happier knowing about the pump and that supplies will be delivered. I thought I would have to get up every hour through the night to put a feed down the tube I told you I was clueless!

I think i've started to come to terms with the fact that dd might need a bit of extra help to thrive. She gets weighed tomorrow so we will see if she gains.

Thanks again x

Hello!

Please can I join this thread? I've just set up DS with his first ever at home feed through his ng tube. Am I the only person who, the first time, is terrified that I've done it wrong and he will either explOde like violet beauregarde or that he's going to sick it all up through his nose or such...

Hi all finally home following a prolonged hospital admission in hospital with DD4 for a colostomy went OK but still has explosive stools. Whilst there another problem reared its ugly head she has a auto immune problem (bugger me I have been saying this for 18 months!!) She has now had IV immunoglobulin and will need more in 3 weeks and referral to GOSH
Enough of me and mine.
Welcome to all new (will need to read properly when not so knackered) as I have said previously all are potty here except me.
Oldsneeze hope all is well with you hope DD is ok. Bit concerned have not heard from Isitme hope all is well with her can't help worrying.
xx

PS just to say North Norfolk is fab especially Cromer I live there

2old - we will be hoping to head to Norfolk (Mundesley) for our hols again next year..... I'll let you know when to put the kettle on!!!!!!!!!!

2old. Hope little DDs colostomy settles down eventually, think its always a bit rough after surgery until things settle. It's got to be better than endless poo problems. As for auto immune probs, if the treatment clears up the things you have noticed over the months its hopefully going to make her quality of life better. poor lamb going through all this. Always one bloody thing after another. Have always wondered why being in hospital is so exhausting...but it is, even though you do nothing and most of its boring with a bit on terrifying thrown in!

Hope isitme is just settling into her new life and nothing wrong, bound to be a major adjustment. Would be nice to hear how her DS is getting on though.

Hello trazzletoes welcome to the madhouse support group. Lots of people on here have expertise, especially re pumps. Don't worry about the explosions, the feed drips in so slowly it absorbs very quickly and even helps with sleeping as these little ones never feel overnight hunger

DD it 16 weeks and looking a bit tummy ish, though admits its mostly cake!! We've been to brainwave and had DGSs check on his progress. Very impressed with how he uses his good hand and being a bright little button, but gross motor skills still very behind. I think the quality of his movements is quite good so the progress maybe slow but I hope steady.

PS. You are just showing off as you live in sunny Norfolk

starfishmummy you would be very welcome to our madhouse
BTW please do not mention holdays at present, have just cancelled our's for next week can't cope with exploding colostomy bags in a posh rented house.
To all new peeps here all I can say tube feeding is a life saver and it certainly takes away "mum stress" My 2 scallywags will never eat, Have not long stopped beating myself up about it
Oldsneeze glad DD is ok and DGS is making progress and you are probably right about Isitme she has a lot of adjusting to do just hope her LO is OK.
xx

2old - its a madhouse here too, so we should get on well!!

Another thumbs up for tube feeding.....DGS had 2 chips from the local chiperama and lips swelled up, hives everywhere and dribbling piriton straight down the tube and 15 minutes was fine. Known allergy to white fish so obviously fried F&C together. Bit horrified really as thought just a mild allergy he would outgrow but obviously not . Reaction much worse than previous so DD may need to look into epipen, though should be able to avoid fish more easily than peanuts. Just another thing to fret about

Little monkey not distressed in any way....typical!

Our lives are ordered and calm

Sorry about holiday 2old. You were probably in need of it after the last couple of weeks

Hi, I just found your group. I have been tube feeding my little girl for nearly 3 years. For the last 2 years she has had a GJ tube and we feed continuously into her Jejunum. It has worked well but we have had a 2 month battle with feeding pumps as the Applix pump we had for 18 months gave up and none of the machines provided as replacements worked accurately (too fast with inaccurate readings). Have been using the Kangaroo but that has been problematic so moving onto an Infinity Pump. Does anyone use these? We have been told we can only use one bottle and giving set a day which I am worried about in terms of germs as we are used to having 2 bags/day. My little girl has a metabolic condition and can't digest fat which amongst a host of other problems makes her muscles floppy, hence the feeding difficulties.

Hi Curly and welcome!!

DS has a flocare infinity and generally they work well.

As for the one bottle/bag a day thing; if the feed comes in a sealed bag and you just attach the tubing by "spiking" it on; then I think 24 hours is OK. If you are decanting from something into a bag then I would say it is not!! (but ds is fed into his stomach so things may be different)

You could contact the manufacturer of the feed and ask them what their recommended "hanging" time is; or another option is PINNT. This is a support group for tube fed people and their carers; and there is a user forum where you can ask for advice from others in the same situation. This year they are offering free membership - www.pinnt.com/

Hi Curly and welcome.
DS is fed jejunally and has been for 2 years due to constant reflux and stomach too small for a fundoplication. We use the applix pump but not overly impressed and like you find it not accurate. DS is fed continuosly over 24/hrs.
The feed comes ready mixed and the bag is spiked and needs 2 bags over night as he 600mls so I use a double giving set.
Have been told not to decant milk and also have to use single use syringes.
Hope you are well
PS Do you use Fresenius Kabi

Any advice on DGSs continued vomiting. DD waiting for an appointment with the dietician to discuss the puking situation. Basically pukes at the drop of a hat! We've noticed as soon as DD puts a bolus milk feed of 50 mls or more he starts swallowing. If he's lying flat you can see it sploshing up into his mouth! So pretty sure this is reflux. He's not in pain at all and never cries, just up it comes (all of it!)

Looked into metoclopramide and very concerned re the side effects. Think maybe its to do with the gastrostomy site tethering the stomach and not allowing normal movement (perhaps?) sounds reasonable to me. Also thinking about domperidone. Fundo op is out of the question, its just not that bad, but DD is getting through endless sets of clothes again. Its definitely getting worse, and used to be only when he had an illness/cold but now its all the time

We do:- Sit him up with boluses, leave him alone for half an hour, try oral feeding more (only manages small amounts) and DD is going to have to give much smaller amounts very frequently, but this wont solve the problem of expanding his stomach (must be the size of a nutmeg!). Funnily enough he never vomits with the same amount of water. Dont think its the feed, as he drank (with a straw) some of her milkshake today and puked.

Advice/insight please?

OH SNAP DS is managing to puke despite having Jej tube I think he too is refluxing but only gastric acid so have stuck a wee bag on gastro port to prevent oesophagitis.
Your poor DGS one thing made me think was being told to rotate the tube and gently push the tube in to prevent it adhering to the stomach wall,
DS couldn't have a fundoplication due to tiny stomach hence jej.
Probably daft thing to say but have you thought of a pump we feed DD overnight and she very active, DS is fed continuosly over the 24 hours,
You probably have considered all this but thought I'd stick my t wopenneth in,
How is your DD hope pregnancy is going well
Take care

Hi 2old. I'm pretty sure DD does the rotating tube thing but I will check. DGS has a pump overnight (500mls) which is generally OK though sometimes he pukes up in the night or in the morning. (doesnt have any breakfast) We dont want to go down the route of daytime pumping as it would interfere with the physio activities and make him less likely to take oral feeds. Its really odd as he didnt do this at first [hconfused]

Sad your DS is having to do the same thing, I cant understand it at all. Can just see DGS having a pukefest at bro in laws wedding on sunday! DD is fine. Pg is going well but has been put on asprin for these uterine notches. Preventative apparently for pre eclampsia.

take care too x

Hi my lovely Oldsneeze DD has 800mls a night (she is 7) and 300 during day over 3 hrs TV and our meals we manage my main concern is her weight 17.1K
ds 14 has 1000mls/day less if he goes swimming (pumps don't work in water)
A wedding coming up (excuse pun) would fill me with dread Good luck but if peeps don't like it tell them to jump im a puddle or words to that effect.
love to all x
P.s.a bit worried about Isitme dubious about PM her