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Gastrostomy/ tube feeding support group...

(1000 Posts)
Isitme1 Sun 03-Jun-12 12:01:16

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!

Tooloudhere Sat 09-Jun-12 12:47:20

Thanks for all the suggestions, we do a lot of is bedtime routine on smell. Bath with lavender, cuddles with blanket which has its own particular scent!, get him to hold the curtains as I shut them with him. He is such a stickler for routine his bed smelling different offends him. I have thought of a cunning plan, I am going to put clean sheets under his original ones for a few days before whipping the tops ones off. Let's see if that works, we already use non bio for washing.

Sneeze cake I hear you on the holiday thing, I empty a massive plastic toy box and use that to take all the feeding stuff but it does take a lot of room and planning! We fill our car with children so normally end up taking two cars to fit all our stuff in!

2old2beamum Sat 09-Jun-12 13:15:55

I am sure a lot of you will know this but most feed companies will deliver milk, giving sets etc to your holiday destination we have done this for several years. Some companies will deliver abroad, have only dared to do this once and DS was on TPN I was a dribbling wreck.

Tooloudhere Sat 09-Jun-12 13:34:37

2old are they reliable at doing so. We have thought about using this service but I have never quite trusted them to get the right stuff to the right place. Knowing me I would probably end up taking my own stuff as well just in case which defeats the object really.

2old2beamum Sat 09-Jun-12 15:20:11

Tooloud they have never let us down but I always take 2-3 days worth with us. I always get the owners to ring us when the delivery arrives. TBH don't think we would get all the feeds in our pantecnican (?sp) and I refuse to take 2 cars.

Isitme1 Sat 09-Jun-12 15:23:47

Awww that's put a smile on my face!
Hope you have a good holiday.
I bought ds some new clothes yesterday. Couldn't wait to put them on so he's got them on today lol.
That's a good idea with smells for certain things and days.

Ds keeps getting battered by dn angry
Really battered!
He keeps smacking him on the head really hard with toys

rosielum Sat 09-Jun-12 17:43:30

Hi everyone, hope you've all had a good day, i don't get on the computer much in the day as have DD1 (tubie) and DD2 who's 11mths so my days are full on child care at the moment! My DD1 has cp as a result of a birth injury and she does have a safe swallow so in theory can eat orally but in practice no way can she eat enough to sustain herself. She started to refuse any food at all once she had her ng tube put in at 14mths and i backed off totally thinking its up to her if she wants to eat or not. but actually the last few months she has become fascinated with food and wants to try everything. I put this down her reflux/constipation being resolved so food doesn't look painful any more iyswim.

Isitme1 Sat 09-Jun-12 20:14:29

Seems like she is comfortable again with food which is brilliant.
Ds atm trying to go sleep.
He was phyisically sick today in the car. I had no spare clothes ( just a quick run upto tesco!)
So I bought him a pair of clothes to change into and did the shopping.
Dniece was with us and she looked like she was going puke too lol.
He's refluxing atm.
I asked him does it hurt. He noded. I put my hand on his face he didn't respond, I put my hand on his tummy and he noded again.
Made me all teary eyed!
How was everyone's day?

Isitme1 Sat 09-Jun-12 20:30:14

Just wanted to ask:
1 has anyones dc had the gastric emptying scan?
2 if it shows his gastric emptying is as slow as what I think ( 10 hours later food coming up undigested- exactly how he ate it) then would the do fundo? I thought fundo made stomach smaller so therefor harder/ more uncomfortable for the child?
Thanks x

2old2beamum Sat 09-Jun-12 20:32:30

Toloud have been mulling over your DS's obession over clean night clothes whilst having Saturday nights [wine} x3. Am just wondering about this
1)3 identical prs of pyjamas
2)3 identical duvet covers,sheets and pillow cases.Whilst using 1st set
put other 2 lots under bottom sheet and 2 pairs of pyjamas under bottom sheet so when they need changing they will smell of him. Just a thought may be speaking out of my arse (quite usual for me[embarrassed])
Love to all

rosielum Sat 09-Jun-12 20:43:14

The fundo basically stops vomiting, if the person has the urge to vomit they will gag still but the 'wrap' at the top of the stomach tightens preventing the stomach content from coming up. I've heard really mixed reports from people on there effectiveness in treating reflux. I personally would want to do alot of research on them before i let my child have one. sounds like you'rethinking the reflux is secondary to something happening further down the digestive tract?

Isitme1 Sat 09-Jun-12 21:02:18

It's just a bit confusing.
He's defo got reflux but I'm questioning has it got the reflux because of slow gastric emptying.
If his food isn't being Digested then the food has to come up but he's got mainly silent reflux.
He was sick today and it was horrible. But he felt better after it.
We've had plenty of times where he has had food 10 at most 12 hours later the food has come out like that- hot dogs, noodles, chips... Exactly how he's had the food.
He's on neocate atm and it's pre-digested so it should be out of hides system within 30mins as it's light and liquid.
He had tummy ache so I thought right vent the tube but it had been round about hour- hour and half and it's still there in his tummy.
2old could lo not have fundo due to slow gastric emptying? Is that why jej tube is used?

2old2beamum Sat 09-Jun-12 21:09:05

Just read Isitme post, slow gasric emptying and reflux resulted in J-peg no scans as it seemed obvious he has been ok since providing he is handled with kid gloves but this may be due to other problems. Fundoplication not possible due to minute stomach,

Isitme1 Sat 09-Jun-12 21:12:46

How is jpeg different to gtube?
And kids gloves? ( are you showing your age :D lol)
I'm sorry if I offend you with asking so many questions but I like to know what I'm up against

Tooloudhere Sat 09-Jun-12 21:17:28

Evening all,

2old bless you for mulling over ds problems. I posted earlier something very similar so if you are talking out of your arse we both are. His pj are all the same so they feel the same on. My thoughts were to put clean sheets/covers under his existing one for a few days before changing them over.

I do wonder sometimes if I am indulging him too much and making him inflexible which will cause problems for the future but I don't know what else to do. I would hate to have my senses reduced/taken away then have to make sense of the world. He has a lot of pain and this makes him upset but we have reduced his frustration and lack of understanding screaming a lot recently by using cues for activities. An example is he would scream and roll around if we were trying to put his coat on, if we are going out now we get the car keys put them in his hands and sign car with his hands then he is happier to get ready, well unless he doesn't want to go in the car!

Sorry for sidetracking everyone for all this talk that is not about gastrostomies and tube feeding.

Isitme1 Sat 09-Jun-12 21:30:09

Tooloud your looking for answers too so don't be sorry.
Anyone is allowed here. Tube related or not we are here and will try to help as much as we can ( I'm not much use lol sorry)
brew anyone?

2old2beamum Sat 09-Jun-12 21:33:40

You Cheeky monkey, kid gloves ---handle with care OK I am 68 but only in the early stages of dementia grin This will now self destruct when readwink
A j-peg goes through the stomach via a g-tube so food by passes the stomach and then the child should be unable to vomit milk. The downside is it needs to be fed slowly (mine just 53mls/hr so nearly 24/hrs a day) everything needs to be as sterile as possible. Just another thought don't think you could use pureed food. HTH

Isitme1 Sat 09-Jun-12 21:40:04

Sorry :p
I'm 20 lol
That's what I thought it was
How's your day been

2old2beamum Sat 09-Jun-12 22:11:16

Day not too bad thanks DS chest infection so sleeps all the time----easy for me but I don't like it!!
The rest D.syndrome 31,27,23 miffed over all the football, where is
Casualty sad them. 6yr old Emanuel Syndrome just happy to do her own thing
Oh hell I could be your Grandma grin or shock
Have a good night says she hopefully

Isitme1 Sat 09-Jun-12 22:22:32

Awww bless.
There's something that my inlaws use and it stinks but does the trick.I use with ds all the time when he's got a chest infection.
If you know any pakistanis/ Indians ask them if they can give you some iing.
Just saying the word I can smell it lol.
It smells like cat Piss lol.
You put it in a bit if it in water then you rub the water on the bottom of feet, palms, chest and back.
It works.
You have to keep los warm though x

Tooloudhere Sat 09-Jun-12 22:32:51

Does it make you feel any better to know you are only old enough to be my mum! (runs and hides) seriously though I am in awe of where you get the energy to deal with all your kids needs. I only have one with sn and one that would probably be classed as sn but I don't oh and a few 'typical' children and I am knackered.

Isitme1 Sat 09-Jun-12 22:57:59

My grandma is 65 this year lol. Mum is 41.
Your like the kinder, more informative gran :D
My gran is very hmmm whats the word?? Makes a penny out to be £100! Over reactive?

Isitme1 Sat 09-Jun-12 22:59:29

And yes I agree with tooloud your doing fantastic!
Your a proper role model!
( to add to my last post- my gran can only just use a mobile lol she doesn't know how to use camera on it though! )

Isitme1 Sun 10-Jun-12 09:47:13

Morning everyone.
Ds had a dreadful night last night.
He was crying 'hurt'.
I don't know if it's his peg site ( crusty this morning like puss dried up)
Or his wee.
It's strong in smell and isn't urinating very much. He keeps grabbing his nappy and smacking his sides of his back. I had his nappy off yesterday day and he cried when urinating.
How was everyone's night?

Sneezecakesmama Sun 10-Jun-12 10:51:02

Tooloud. I think you are doing the right thing with working round DS s sensibilities. His world is mostly sensory and children with SN often need a gentler and more intuitive approach. There is nothing to be gained by causing distress. I don't like NT children being left to cry, so why often more sensitive SN ones?

Isitme I wonder if DS has a wee infection sounds like it to me. Increase his fluids and if he is still distressed I would see your emergency dr.

My daughter says I am spoiling DGS? Moi! I have only bought 5 of the 7 buggies he has far! We won't mention all the toys blush

Sneezecakesmama Sun 10-Jun-12 11:06:48

Oh forgot to say re gastric emptying. Little isitme certainly needs investigating if this is the case. Some of the tummy pain may be due to this slow transit causing a build up of gas. I think DGS has a weak muscle at the top of his stomach which means he vomits easily if his tiny tummy gets full, but his dad and grandad suffer with reflux (strangely dgs doesnt at the moment).

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