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

999 replies

isitme1 · 04/12/2013 08:29

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

OP posts:
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24
ilovemonstersInc · 01/06/2014 16:45

Welcome and sorry youve had such a hard time.
I think his reflux needs to be controlled first. A fundo may help with that. Tubes imo are a saviour once everything has settled down. Took ds months to get over his initial infections (I thinknit was either 6 or 8 lots of antibiotics that he had within 6months due to peg)

Night feeds iirc arent the best for a refluxy child as they are laid down and its easier to reflux plus aspiration (or what ever its called when crap goes on to the lungs) mainly happens at night, we all do it but refluxers do it more.
Is he suffering from slow gastric emptying? Could be a reason hes not hungry 3hours later (again like ds)
I dont think there's a magic solution as such to get him to eat. Is he under salt? They help a lot!
The best thing to do is not to get stressed during meal times, offer lots of distractions during feeding times (tv kids shows with lots of singy songs, toys, books etc)

If it helps your ds is eating more than what my ds was at that age and ds had his peg in at 18months. Its been 2 years since he had it. At first I hated it and when they told me he will need a tube I cried. My perfect little boy had to have a piece of plastic in him to keep him alive.

Tubes do/can come out once a child is thriving.

Ds: 4 in September
failure to thrive
reflux
cmpi
and now autism and adhd so it's all linked. But never knew before. Hes had meningitis and septecmia in the past too.
Flowers

ilovemonstersInc · 01/06/2014 16:46

Oh and reflux is truly shit
I recommend colic solved (Google it its a book from America) and little refluxers website.

Also if you are any where near Sheffield dr Thomson os absolutely brilliant and does private too

Sneezecakesmum · 01/06/2014 21:17

Hi Sarah. It's sounds awful the problems you've had with the PEG but it sounds more like the hospital stay, the illnesses and the general trauma that have caused the feeding issues and even if it were removed things basically won't change, it's just time needed for everything to settle and slowly start to improve. Can I also say that an ng tube is much more uncomfortable than a gastrostomy in the long term. You have just been very unlucky.

If you have been advise overnight feeding is safe then I would do so but not 500 mls to start with. 200 very slowly and build from there. Elevate the head of the cot on blocks (probably already do!). Overnight feeding is not unsafe unless they are big wrigglers, but we used to put the tubing down elli's pyjama leg and the pump at the bottom of the bed.

Something that a lot of people don't realise that the less food you take in the less hungry you feel. Anorexics feel little hunger whereas obese people, despite huge food intakes are usually constantly hungry. So ensuring plenty of food even if it is via a tube so that the child is well fed and putting on weight, will stimulate appetite not depress it. Obviously feed orally first, but I gather that the formula or bottles going down the tube are what's prompting the vomiting? Vomiting is a major cause or oral aversion as is refluxing. Also trying to feed a reluctant child ends in aversion.

It sounds as though your DS may still be having some intolerance to the formula or to dairy.

You are unfortunately in the same situation we were when el was 3.5. Vomiting continuously on formula, poor weight gain, constipation, tired, still eAting little Sad. I personally think these formula feeds are the work of the devil Grin although they do suit some children. However they are full of rubbish and lacking in so much and seem to be the cause of a lot more gastric problems than they solve, like reflux, slow emptying and most of all vomiting. Let's face it a feed that the body is rejecting on a regular basis is something not good for it!

What turned the corner for us was feeding blended diet. Which is just good quality food, blended, sieved and syringed down the tube. A mum from here put us onto it and we have never looked back, as have a few hundred parents who are on a Facebook site, blended diet UK. All with stories just like yours and ours! 2 years on el is normal height and near normal weight, no constipation, healthy, very little vomiting, on no medication and never needing a fundo OP. Still very orally averse, but he has cp which affects speech and mouth movements although he has a safe swallow. He can and does eat things though and we have many instances of children being weaned off their tubes after being given blended diet.

It's probably too soon for you to go that route at the moment as it's all very new, but do bear it in mind for the future. Meanwhile go back to dairy free, and try a small overnight feed to build m up for eating. Also look at the different medications suggested.

Hope all this essay helps
Xx

Louisajane27 · 02/06/2014 22:28

Hi alamaya, I'm afraid I can't offer any advice as I am very new to tube feeding but the advice you'll get on this thread is great, good luck.

How has everyone's weekends been?

We have had an ok weekend. I have figured out why ds2 is sick. It tends to be every time he fills his nappy! It must be the pushing but I have no idea how to avoid this! He's also not been interested in his bottles the last couple of days (we offer 3 bottles a day along side his 6 tube feeds) Not upset just seems bored of them, I'm not sure what to do?

ilovemonstersInc · 03/06/2014 08:19

Weekend has been shit.
Feel like im 1 man soldiering it for the boys atm. Dh goes to work comes back eats and then doesnt get up to do fuck all. Saturday is his 1 day off which if I don't say we need anything he'd stay in bed all day.

Had a hard time trying to get hold of the right people fords. Child ddevelopment wont give us a date for his appointment. But all we know is hes on the waiting list for July. Thing is his behaviour is getting worse everyday and because of that ds2 cant sleep as hes always too noisy or jumping or running around. Even if its 10pm he still wont sleep despite being bathed and put into bed. He will sit there babbling gibberish to himself and start shouting.

On the other hand he was only sick on Saturday.

How is everyone

ilovemonstersInc · 03/06/2014 08:20

Lousia I would just carry on offering. You cant force feed him and if he fancys it he will drink. I know its frustrating. Trust me. Ds had nothing all day orally apart fron 3 pringles and a bite of noodles Hmm

Sneezecakesmum · 03/06/2014 10:18

Ilove Sad It's not sounding very good at the moment in your house. I think dealing with autism is a whole different game and very very difficult. I've no idea what to suggest especially if DH is being a bit of an ass. Especially being pregnant again. Sad

Louisa. If DS2 has reflux maybe a weak muscle at the top of his stomach, so I can see why he would vomit following pushing to poo! Not much you can do really except give more feed maybe? Have a word with whoever is managing the tube feeding. Maybe reduce the tube feeds so that he is hungrier. Needs advice though from someone who knows DS2 to see if this is the right thing to do.

We are already tearing our hair out here with the indoor building works and outdoor building works. Weeks to go still. I can see the whole summer being sucked into this black hole.

ilovemonstersInc · 03/06/2014 11:48

I should just go on strike shouldn't I sneeze Grin to cheer me up I went out in the car to the closest village to shop. Didnt get much though lol. Still made me smile as I did it myself

Sneeze go on a looooonnnggg holidayand come back when its done Grin

Giddypants · 03/06/2014 20:31

I've no idea why your moaning about the building, it's at my house not yours lol!
It's coming on, but only just started really
El having a bit of puking lately, not much just a mouthful, but he hasn't done it for so long, I just wonder what's going on?
Al is fine, took him swimming this morning, he loved it. Thought it would encourage him to go to sleep, but no!

Louisajane27 · 04/06/2014 21:09

Sorry to hear about the rubbish weekends, hope your all having a better week so far Smile

We are still offering ds2 his feeds and he is still only taking a small amount! At least he is not refusing to drink. Hopefully we will get another appointment with salt soon and I can ask them for some advice.

ilovemonstersInc · 05/06/2014 09:05

Could you ring salt and get some advice over the phone? Our salt is fantastic. So is the dietitian. Both will give advice over the phone or email.

Giddy did he enjoy it? Still haven't got round to taking the boys but thats mainly because ds1 wont do anything but scream so it will be no fun for any of us

how is everyone

Louisajane27 · 07/06/2014 11:25

Hi, thank you I spoke to salt yesterday and they are going to come to the house next week, so they can observe a feed and give advice.

Hope your all having a better weekend. We've had family visiting the last couple of days and both the kids are now exhausted. Poor ds1 dosen't know what to do with himself as he is so tired!

ilovemonstersInc · 08/06/2014 08:11

Glad they are coming to observe hopefully they can give you useful advice!

had a worrying weekend as baby has decided he doesn't want to move a lot any more and give me lots of braxton hicks plus period pain. I had an easy 4 hours doing very close to nothing and he didnt move until the last 10mins. Anf that was a lil kick. These babies do liketo worry us

Sneezecakesmum · 08/06/2014 09:45

Anyone used chloral hydrate on their child? Got this from paed for the screaming nightmares or whatever they are el sometimes has and had a couple of half doses which did work, but yesterday did an exorcist like vomit which he hasn't done for ages. Of course it was spaghetti boleignaise and was luminous orange. Needed a full on bath to clean him. Sad. Has done very little vomiting lately and sleeping has been generally better but odd awful nights still.

ilovemonstersInc · 08/06/2014 09:48

Nope sorry sneeze. Poor el :( im guessing its going to be a side effect of the med. Not nice :(
hows jess and al?

2old2beamum · 08/06/2014 18:59

My computer finally up and working, fingers xed.
Have briefly scanned messages.

DGD hope baby in utero is moving more.

Oldsneeze Jay has chloral which we use reluctantly (only 500mgm) which is very little considering his age. I do remember years ago we had to give it with a fair bit of water and I remember a little boy said it burnt him inside
Sadso is it very acidic?

Will get back more in mode tomorrow.

XX to all scallywags

ilovemonstersInc · 10/06/2014 08:35

Yay granny's back.

How is everyone?

What do you all think of this?
It was redy orangey oily specs in his aspiration this morning.....
he was admitted for this in January Confused

ilovemonstersInc · 10/06/2014 08:37

Ps they are tiny. He had a few on different sheets of paper this morning. They are near the feet of the little girl

Giddypants · 11/06/2014 21:42

Not really sure, what were they last time?

ilovemonstersInc · 12/06/2014 08:13

Dunnooo they were supposed to scope him but nothing.

Ds has his appointment through for Sheffield! Next week Grin after seeing normal paed about his other problems

had scan yesterday baby is a little fatty lol efw was 3lb! Hes a few weeks ahead. Have another2 scans to make sure hes not too big!

ilovemonstersInc · 12/06/2014 08:14

They didnt scope so don't know.

2old2beamum · 13/06/2014 10:26

Hi DGD have no answer to DGGS's aspirate TBH I never aspirate their tubes so I have no idea what goes on!!
Glad LO is doing fine when is he due?

Hope everyone else is OK

ilovemonstersInc · 13/06/2014 16:49

I only do it on an off chance. Hes got an appointment next Thursday with the good gastric.

Baby no.3 is due end of August
apparently baby is supposed to be 1.2kg anf hes 2kg bymmeasurements. They have been accurate in the past about weight they estimated 9lb amd ds2 was a few oz off.

How is everyone? Ds1 is having more problems with asd. He keeps hitting himself :(

Louisajane27 · 13/06/2014 18:10

Hi, how is everyone? Hope your all ok.

SALT came and saw ds2 today and agree that his feeding has got worse. They have said just to keep trying to offer him feeds and to do some sensory work with him. They also have concerns with how floppy he is and his posture. They want him to receive physio, which were kind of expecting due to his brain damage before he was born.

ilovemonstersInc · 13/06/2014 20:36

At least they agree hes getting worse. So will they refer him to physio or do you have to see gp or someone?

Ds has been going nursery for over 2 years and they have just decided 3 weeks before he leaves to give him a reading book for home Hmm really dont get them