Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

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:
Thread gallery
24
2old2beamum · 26/02/2014 19:12

Please give hospital/doctor a phonecall just to check things are ok your son is so precious, It will be lovely to be told you are fussing after what you have been through

GreatExpectation · 26/02/2014 21:01

Thanks 2, am in regular contact with his dietician/SLT and the hospital, so he will be safe. Worst case scenario we pass another tube, but I'm really hoping he can turn the corner soon.

2old2beamum · 26/02/2014 21:28

Sorry to be bossy but am glad you are on top of things. Hope you do not need to pass another tube and he sorts himself out soon. But as many will say here the tube has been so useful!! Good luck.

Hope the rest of you are well. We are off to the Cotswolds for our break to show B,E and L where my family originate instead of Yorkshire where OF's family come from.

Goodnight you little tinkers.

Oh nearly forgot welcome Elli there are some quite sane people here (scratches head) am sure you will find some help!!

isitme1 · 26/02/2014 21:35

Welcome great
rather than going cold turkey could you gradually reduce feeds and encourage oral intake that way he willhavethe eenergy to feed?
Flowers ps your a really brave mum x

had some bleeding
I have 'a small blees in front of sac' could be from placenta implanting? I thought that happened in the early days Hmm not at 14weeks!

Back hurts tummy hurts
they didn't check urine properly either! There's no way strong smelling very dark wee is normal Hmm

OP posts:
Giddypants · 27/02/2014 07:42

isitme can you get checked by EPAU for a quick scan, just to be sure everything is going ok?
suck a brave mum Thanks jus a stupid question, has your lo had oral food before? as he may just push everything out like they do when they are first weaning

GreatExpectation · 27/02/2014 07:48

Yep, he's been offered solids since 7 months. Enthusiastic taster/chewer but he mostly spits it all out. He usually loves drinking water too which is a plus. Just seems to hate milk!

isitme1 · 27/02/2014 07:50

I went epu yesterday. Bleeding was just a bit of pinky on and off. Woke up this morning at2.30 wentto loo and it was red but they said it will be from the bleed in front of the sac which ive never had.

X

OP posts:
Bewilderedotcom · 27/02/2014 09:56

Greatexpectations. I am so pleased your LO has come through his treatment and is doing so well. You poor thing, you must be a nervous wreck!

It's clear DS has an oral aversion, not surprising with a nasty ng tube at the back of his throat for such a long time and all the puking and sore mouth associated with chemo Sad

I take it he won't tolerate any kind of milk? Even watered down milk? How about fruits which are watery like apple (all in a puréed form of course)? I would keep things fairly sweet, very watery and the type of food babies are weened onto. If you can think of a tasteless food (avocado?) and mix it to a watery consistency to spoon into DS.

Do all the usual stuff with reluctant eaters, sit him with the family to eat. Finger foods like bananas that he can play with. Mashed potato and so on.

Can he chew? Will he take to chewy toys like babies have as he probably isn't even good at chewing movements yet because of the tube bypassing his mouth.

I am going to make a suggestion you probably won't like but if you give it some thought now if the docs suggest it you will be prepared with your answer. Firstly putting another ng tube down may just continue the problem you are having. The tubes are uncomfortable to live with and make all swallowing, especially food difficult. Would you consider having a gastrostomy tube down? Yes it's a minor OP with a week or so to recover, but kids get used to them very quickly and it gives you and him time to work on the oral aversion while not stressing about his overall health.
I am sure that within a year he would be eating normally.

What DS needs is time to readjust to normal eating and he won't get that existing on just water. The adjustment can take months. Obviously the tube would be a very last resort, but they are reversible very easily and give you that breathing space. We fought it for about a year but seeing the LO fading away did it for us. The reduction in stress was immediate and we have not regretted it.

Good luck.

Bewilderedotcom · 27/02/2014 09:58

I AM NOT BEWILDEREDOTCOM....I AM SNEEZECAKESMUM Grin

Hope all goes well isitme? Pg is never straightforward.

isitme1 · 27/02/2014 10:27

Lol sneeze.
Yeh its oldish blood now so im happy. Im glad I went yesterday to epu as I got to see a healthy baby (laid upside down kicking downwards lol) and if I wouldn't have gone yesterday I would have thought thw bleedingwas ssomething more sinister which thankfully ita not. My pg problems normally kick later in pregnancy!

I second the gastrostomy just to help rather than a nasty ng. It's such a help! And your ds will have the energy to feed and if he has the energy to feed he will hopefully have the energy to play thus making him hungry amd wanting to eat? Maybe you could have night feeds to keep him topped him and leave him free during thw day?
X

OP posts:
elliejjtiny · 27/02/2014 11:37

Thanks everyone for the welcome and isitme glad all is ok with the baby.

DS4 had an ng tube when he was born but when he pulled it out the paed thought it would be a good idea for him to learn to feed orally. He was doing really well with the tube in but when they took it out his weight gain wasn't good. I begged for them to put a new tube in but the paed thought it would be better for him to learn to feed from a bottle.

At 5 months his weight was finally ok so we had a month before we started weaning and it going pearshaped again. I'm thinking a tube will be useful when he gets older as he can't carry on getting most of his nutrition from infatrini milk for ever. At the moment though his diet of mostly milk with the odd bit of purees syringed in is ok.

GreatExpectation · 27/02/2014 15:22

Thanks for all that advice Bewildered. He will not accept a spoon whatsoever and won't spoon feed himself. He's also very suspicious of purées and avoids them. The only things we can get him to eat are crunchy finger foods.

Sigh, the NG is back in. Gastrostomy has never been mentioned by anyone but I have wondered. He's already got loads of scars from various things being poked into him and a Hickman line (for iv access) I dread the thought if something else.

isitme1 · 27/02/2014 15:40

Ds eats crunchy finger food
toast
Pizza base
crisp
rice
From asian food stores 'cake piece/rusk' crunchy dry and better than nothing
he eats cucumber and he used to eat breadsticks

OP posts:
isitme1 · 27/02/2014 15:41

Ps when he wants to eat. .he used to eat fish fingers but not any more
he is doing ok on kfc chicken drumsticks (mainly the breadcrumb batter on the chicken but heyho its food)

OP posts:
isitme1 · 27/02/2014 16:03

Oh how did I forget coco pops??
He saw them in tesco once and we had to get the big box which had to be opened straight away and then he wouldn't let anyone scan it lol but again only if hes inthe mmood. Hes had 1 biscuit all day today.
Yesterday he had some crust of a subway.

OP posts:
Sneezecakesmum · 27/02/2014 16:51

It's bewildered.com....bewildered?
I understand completely about the tube after all the other traumas.

Cheesy wotsits are a big hit with DGS Grin

I think it's some progress that he will eat something and is developing that all too important skill of chewing!

I am thinking outside the box here, hence to gastrostomy suggestion. (Hate that box expression Hmm ). Anyway children can taste what's in their tummy usually with a little bit of reflux so taste is important. Formula milk doesn't taste especially nice and has very little taste variety compared to food. Another observation is that if you eat well and get regular full tummies it encourages your appetite. Which is why obese people can actually continue eating when they are stuffed and anorexics have very little appetite. That scientific btw Grin

In other words eating food makes you want to eat food.

We belong to a Facebook group called Blended Diet UK where we do not feed formula because it can aggravate reflux, doesn't encourage real eating and is full of processed crap .... I take that back it is full of crap!

We all blend real food, or use such things as Ella's kitchen pouches, baby rice, stewed apples etc and put it down the tube. There are more and more professionals accepting this gives healthier children of normal weight, without reflux or constipation, but it's a bit Shock to some.

We know mums on this group who have used ng tubes despite them being so narrow but not us personally. If you want to join and get some ideas you are more than welcome. It might just be something that works to get DS interested in food.

I actually think that regardless of what you do DS will be eating fairly normally within a year, especially if he goes to nursery and sees other children eating. Overall I am very optimistic for you but understand totally the frustration of having come this far and stumbling a bit. Believe me it is just a stumble Smile

2old2beamum · 27/02/2014 20:33

Very wise words from oldsneeze despite being Confused about who she is Hmm but she does know her stuff.

Bad day here culminating with Jay having a massive seizure in the hairdressers nearly had to give her CPR never mind Jay!!

isitme1 · 27/02/2014 21:59

Granny aka midwife
Small bleed in front of sac? Possibly from placenta implanting. Had red bleed this morning now older browny bloodin the afternoon now nothing so hopefully no more?

what about dtd? Birthday in2days lol
X

OP posts:
Sneezecakesmum · 28/02/2014 10:06

Oldsneeze here Grin

How dreadful with poor jay in the hairdressers. Do hope he is OK fekking siezures are just horrible. Maybe he has grown a bit and needs his meds upping? Sad

Xxx

Giddypants · 28/02/2014 17:42

Hope jay is ok, sending my love to him xxx

isitme1 · 28/02/2014 20:30

So granny didn't read your post properly.

Hope Jay is better x

OP posts:
isitme1 · 28/02/2014 20:36

Arrrghh that's supposed to say sorry Blush

OP posts:
2old2beamum · 28/02/2014 21:39

Look my lovely DGD NO need for sorries. More important is how are you and my DGGS's?
Re Jay seizures still coming 3-4 times a day. Neuro discharged us as her registrar was more interested in our relationship with Jay. First thing he said was "and who are you?" I know we are old but he could have given us the benefit of doubt if you get my drift!

Hope your bleed has sorted itself out I hesitate to give advice unless I can see you.

Thanks Oldsneeze and Giddy . all support gratefully received at present
Love to all my little scallywags

Giddypants · 01/03/2014 10:41

Shock how rude 2old! Some people don't even know they're born, or how lucky they are!

We got the dreaded phone call from school yesterday, El not well again, kept coughing then was sick. Thing is we were in Sheffield, so a fair way away, it's for that reason, I don't like doing anything or going anywhere just in case I get that call.
He's ok now maybe a bug he's been sick a few times in the night and looking sorry for himself.

Has the bleeding stopped isitme? Did they give you a time frame as to when it should stop?
How is everyone else?

2old2beamum · 01/03/2014 15:14

Oh giddypants you so speak my language. Like you we are 30miles away from school and hospital, mobile 'phone reception crap. Basically we are stuffed someone has to stay by landline!!
Hope little El is ok now give them a big sloppy kiss from me URGH!

DGGD are you ok XX