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Gastrostomy/ tube feeding support group...

999 replies

Isitme1 · 03/06/2012 12:01

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

OP posts:
Isitme1 · 06/07/2012 13:34

Hope little gali gets sorted soon

Had an absolute set back.
Took ds to a different play group today.
He screamer until he was sick :|
Then played a little
Then screamed so much we had to leave.

Just feel a failure today.
I couldn't even get him to shut up.

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2old2beamum · 06/07/2012 15:22

Isitme how many times have I got to tell you YOU ARE NOT A FAILURE. You have a little boy with very complex needs following a vile illness. You stuck by him,you are on your own. Many mums would have run for the hills (look at my 8's parents all scarpered) You are a brilliant mum and your DS is lucky to have you. One bad day at playgroup doesn't make you a disaster.Flowers x10 for you. xx
PS Forgot to say you are lucky to have him too x

2old2beamum · 06/07/2012 15:24

Galli have a brilliant time you deserve it

Isitme1 · 06/07/2012 17:02

Just fully read all posts
Wow galli you both deserve it!
I hope the rain stops!
That's cheered me up!

Ds has been in a rotten mood all day.
Got cm coming over.

Thanks 2old
X

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Isitme1 · 06/07/2012 19:52

Swab taken
Had to drop it off at a+e.

She thinks it's thrush.
Let's see what the results say x

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Isitme1 · 07/07/2012 19:50

Hope everyone is good.
Galli I do hope your having a good time with ds.
The sun is shining here hope it's the same where you are!

I randomly met a woman who works for autism society.
We were on the tram home and she offered me a seat. Then she asked how old ds is and she said he looked small. I didn't want anyone to think I didn't feed him. Her gs had a tumour. And peg too. Just had peg taken out and he's not eating much. Little improvement from nothing to soup.
Anyway she was asking if about ds and she said she thinks he's autistic.
I don't even fully understand that term. I hope I don't offend anyone.
No matter what he's still my baby but I don't wan him suffering any more!
Feel very disheartened. He's never said mama to me or dada and meant it. I'm always telling him whats what but doesn't seem to be sinking much. His vocabulary:
Ummi ( very rarely if he wants dummy)
Tank u ( Very rarely too. Been a very long time since he's said it)
LOve u ( again I say it like a babble very sing songy and long literally like mama looooooooooooooooove yoooooooou.) don't think he understands it.
He cant say bye it's I.
He understands word shoes and lets go.
Nothing else.
I saw a little girl at playgroup 18months old and she was telling me the balls had gone. I think play group will make me more :( with regards to him speaking.
It's hard im on my own. Feel very disheartened

Rant over I think

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sneezecakesmum · 07/07/2012 20:10

2old. DGSs beauty spot (and also what the paed put as an afterthought) HAPPY CHILD!! He is that and loved to bits too Smile Feeling back to normal today Smile I usually bounce back.

Galli Hope you have a lovely break and the rain flaming well stops, we are sooo tired of it!

Isitme. Please dont get disheartened. I am totally shocked than someone on a tram could say that DS has autism! That is so out of line. If you have concerns mention it to your HV, but I would have thought if it was the case someone would have noticed before now? It horrible coping on your own. Its isolating enough to have a child who is different without being alone. Rant away!

Isitme1 · 07/07/2012 21:24

I wasn't offended by her.
I just thought autism meant that they don't like change which ds doesn't ( to an extent)
I've thought about it in past.
Mum thinks he's got ADHD.
I just feel like I've ran out of energy.
He doesn't have a good quality of life as he's so scared if everything
I can't enjoy him as I'm either too worried about him or trying to do something for him.
I'd managed to feed him but 2 hours later he was just sick.
It all came out.
Past few days he's been just staring into space
Scares me.
It

OP posts:
starfishmummy · 07/07/2012 22:29

I agree with sneezecake - the woman was way out of line. As someone who works for the autism society she should know better.
If you have concerns then you should be discussing them with your sons doctors.

Isitme1 · 07/07/2012 22:35

Gp and hv are both 'out of date' they are very old school and don't believe in reflux ( they class it as colic) or behaviour probs. I'm trying to get ds on even keel before changing x

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Isitme1 · 08/07/2012 14:54

He's ill today. He's got temp of 38.9 which is the same as when he had meningitis :(

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sneezecakesmum · 08/07/2012 20:40

Poor little DS isitme. I hope its just a minor bug. Kids this age are forever unwell. Maybe something he picked up at playgroup? DGS has had one thing after another since starting nursery. I think only one or two weeks when he didnt get anything. Maybe he's been coming down with this bug the past few days and acting a bit disconnected?

Isitme1 · 08/07/2012 21:04

He doesn't sleep during day and he slept 3+ half hours today.
Took his temp as he looked very flushed and it was 38.9!!
Tried to wake him gently. Didn't work in the end niece did the job.

Took him walk in centre temp 39!
She said o it's come down :|
She checker urine ( asked for collector bag at book in)
He keeps grunting :(
He's had nurofen once and 2 doses Calpol and temp is....
38.8
He's just in pjs no vest
Been sick. Trying to top his fluids up but not working really.
Think trip to gp is in order in the morning
X

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LauraG1 · 08/07/2012 21:15

Hi all! I have joined mumsnet today as i really would love some advice and to chat to people that are in the same boat as me! My son is nearly 1 and has been tube fed since he was born, i started weaning him at 6 months but hes never shown an intrest in foods really and is going through a lovely stage at the moment where he is bringing up feeds at meal times, we are trying to work out weather its a behavioural trait or reflux? We are seeing speech and language therapist in a few weeks but no one seems to know what to suggest. Im giving him finger foods as he seems to gag more with puree feeds. He is awaiting heart surgery at some point and the focus is getting him big enough for it as he was also 2 months early. Any suggestions much welcomed!!!!!! Thankyou for your time xx

sneezecake · 08/07/2012 21:33

Welcome LauraG hope they get to the bottom of the puking, it's awful when they don't keep anything down!

Isit how is he in himself?
Hope it's just a minor bug and he gets over it quickly keep going with the meds.

Isitme1 · 08/07/2012 23:13

Hi Laura
It could maybe be a mix if both.
Finger foods are best and they are harder
To bring up unlike purée foods.
Apple slices
Fish fingers
Toast squares
Crisp
Bread sticks
Hot dogs
Potato cakes
Garlic bread
Pizza
Pasta without too much sauce
Hmm
Pear slices
Bananas are more moist so probably won't eat them
Chucked nuggets
I boil a chicken leg in a bit of oxo and tiny bit of onion ( well used too) and he used to love it.

Hmm can't really think of any other foods
Hope that helps a bit
X

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Isitme1 · 08/07/2012 23:14

Lol chucked nuggets
Has anyone tried any yet
[blink]
I'm sure you know I meant chicken Blush

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Isitme1 · 08/07/2012 23:14

Damn I meant Wink
Blush
Fingers don't want to work correctly!

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LauraG1 · 09/07/2012 07:38

Hi thank you for your messages!! Hes really well within himself so im less inclined to think its a bug as thats what i was first thinking but this has gone on for over 3 weeks!! Dietician doesnt think its an issue though?!! Thank you for all the finger food suggestions especially chucked nuggets! :) Its getting to the point where i dread feeding him which isnt great and doesnt help him if im so nervous!!! Thank you again xx

starfishmummy · 09/07/2012 08:09

Laura it is quite common for children who have been tube cedar since birth to have developed a food phobia. that he has shown no interest in food since he was so young its likely that he doesn't really know what eating is about iyswim. The sickness probably doesn't help either.
I wpuldnsay continue to offer food but as long as he is getting something via his tube, don't stress too much. I know it is easier said than done from experience!!!!

starfishmummy · 09/07/2012 08:13

Cedar!!!!!!!!???!

That should be since! And er that odd word is would say!!

Blush
Isitme1 · 09/07/2012 14:49

One thing I have learnt is that the tube is a life saver and it takes pressure of eating so I've been told I don't need to make ds meals as he doesn't eat them any way but if he has half a biscuit wishful thinking but it takes pressure off eating.
Even if ds doesn't eat what I put in front of him I'm happy with him taking a chance and touching the food. If he plays with it it's brill If he squishes it that's good too. It's --sack baby steps/- fairy steps. Little tiny movements forward and maybe a few back.

Dont let him see you stressed as they think there's something to be worried about so hey presto he will think food is bad as mummy is stressed
X

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Isitme1 · 09/07/2012 16:49

Oo
Ds has got tonsillitis and ear infection again not surprised by the amount of acid reflux he's suffering from
his temp had climbed to 39.8!!!
Very confused and worried

And the a and e dept we went to said they are going to write to his hv because he's been 17 times in 22 Months.
Well hello I'd say 8/10 times he's needed treatment!!!

It's te gps job to think hmm he's got a low immune system something needs to be done!!!! I've told him before but he doesn't listen too well.

X

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sneezecakesmum · 09/07/2012 19:01

Isitme. I would change your GP as he doesnt seem to be very helpful. Hope DS picks up soon with treatment.

We are gradually building up the volume of feeds with little DGS hopefully to stretch his stomach and make his actually feel hungry occasionally! PEGs definitely take the pressure off eating Smile

2old2beamum · 09/07/2012 22:00

Hi all
frantic weekend DD5 birth parents came for the day-not that stressful as they are a lovely couple and we get on well thank goodness. Sunday good friends visited needed feeding--bless them.
Things not too bad DD2 decided too have a fit of wheezing now on Prednisilone and now says she feels a lot better----after 1 dose Confused
Isitme hope your DS is a little better I can understand your worries DS6 never gets a temp as the bloody meningitis destroyed his hypothalmus gland (temp control)XXX for you
Sneezecake or her mum glad to hear your paed found your LO's beauty spot. At my age it is confusing who you are GrinGrin
Finally but not least Laura as Itisme said look on the tube as a life saver not as a failure my 2 will never eat anything so I look on the tube as a unfortunate necessity No one has said on this thread we are lovely but totally
barmy not me ofcourse Smile
Starfishmummy included