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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!
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Isitme1 · 19/08/2012 19:51

Aww bless him
Ds doesn't nap during the day most of the time, he's been up since 6 and has just gone to sleep. He napped for about 3 mins in the car lol.
He's a bad sleeper anyway and if he sleeps during day he won't sleep at night.
If he could he'd be bouncing all day and night!
I'm sure when he's a little older they will say hyper activity or something.

When dh comes we will be moving within the first month hopefully.
He can't stand My family for this reason. I know it's a bad thing to admit but I am his wife and that's a powerful positiontohave :)

You guys ds and dh cheer me up thanks.

Thanks Littlest bro has been very nice to me I think he may have a heart lol.

I think my new grandmum is grand too (and you sneezesmum, you can be my grandmums sister Grin)

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Isitme1 · 20/08/2012 20:18

How is everyone? X

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KateShmate · 20/08/2012 21:26

Hello, I was wondering if I could join? Sorry if I'm a bit late, I completely missed this thread!
I have 3YO triplets, one has Ketotic hypoglycaemia and so is PEG fed throughout the night. We had to endure a complete nightmare before the diagnosis as DD basically had absolutely no energy for about 6 months - not the usual 'laying on the sofa, tired', but full-on no energy. She barely spoke, couldn't walk up/down the stairs, barely ate and was asleep for most of the day - not normal for a, usually, over-active 2YO! After a few months, DTriplets nursery refused to have her anymore as she was so poorly. But we just couldn't get any answers - we saw most of the GP's at our surgery and they just said that she needed to sleep more (more?!) and eat more. She was admitted to A&E with dangerously low blood sugar, yet they still wouldn't give her a diagnosis. We kicked up a fuss after we went in to wake her up one morning and she was completely unresponsive. They finally got a consultant to see her and diagnosed the hypoglycaemia - a condition which is quite similar to diabetes, but children will normally grow out of it before the age of 10.
We explained that mornings are the worst for us as she has had a full nights sleep without any food. His answer was to wake her every 2.5 hours to feed her.... we saw a different consultant when the current one was on holiday, he first saw her, took one look and organised an emergency operation for PEG fitting. We had it done a few months ago and haven't looked back! We have a different child!
There have been mentions of a 'Mic-key' button recently, and she is due to be fitted with one in the next few weeks. Any experiences with this? I haven't been able to find much research about it.
I hope you all don't mind me posting, I wish I could have found this thread a few months ago! Kate :)

2old2beamum · 20/08/2012 21:59

2nd posting GRRRRR

.How are you grandaughter and greatgrandson hopeyou are well also oldsneezecake, are we related now? I will leave you to sort it out.
A little tale that may touch you . When I was a Student Nurse we had a little lad with crap kidneys (no transplants etc then) He was in hospital for drug reassessment) he was one of my favourites and he needed his BP taken 4/hrly
I went to take it with a sphygmomanoniter and stethoscope he was asleep so I was gentle I took it I heard nothing then x2 more ( nothing) suddenly he started shaking, no not a seizure, with laughter --the little bugger had stuffed plasticine up the end of the stethoscope. I collapsed on the floor with laughter
Have had a good day here DS5 has yet to realise we are reducing his Amitriptyline DD4 is full of beans between 01.00 -04.30 Knackered 2old Hmm+
sleep well all you little scallywags xx
XXfor my new greatgrandson

sneezecakesmum · 20/08/2012 22:10

Hello kate. Welcome to the thread. There is a definite expertise in the button department, but not from moi Grin omg your DDs diagnosis is pretty rare and must have been a real uphill struggle to diagnose. The overnight feeding via peg is the perfect solution.

2old lol bigtime at little bugger and the plasticine Grin we all had our favourites! Am totally confused with all these relationships, too senile to work it out.

Silence here for a few days. sadly off to DBs funeral. Still not really sunk in, so weird feeling but expecting it to be awful. Family will be there for DSIL so hope we help her. They never had kids, so she's all alone. She has great friends though. O well.....

2old2beamum · 20/08/2012 22:16

Obviously Xposted
KateSmate welcome I am the oldest but probably the sanest mum on this thread Grin
Seriously they are a brilliant bunch with loads of support.
RE Mickey I am not the best person to ask as I am a PEG/PEJ fan but mine are both non mobile.
I am sure you will get help from the other scumbags here.
take care xx

KateShmate · 20/08/2012 22:26

Hi sneezecake , thank you! Am not really sure how rare it is - haven't met any other children with it! It was definitely an uphill struggle to get a diagnosis - we had so many GP's tell me that there is nothing wrong with her, and that I'm looking too far into things; it pisses you off so much because obviously I don't want there to be anything wrong with her, but I knew there was! The stupid 'diagnosis' we did get though - we need to feed her more, more daytime naps, stop making her walk everywhere (?!), keep her in a buggy all the time etc etc.. very annoying! Totally agree that the PEG is a brilliant solution!

So, so sorry to hear that you have lost your DB, sneezecakes Sad

Isitme1 · 20/08/2012 22:49

Wow it's been busy :)
Love it when there's lots going on lol

welcome kate I do hope you get some answers from our very mixed up crowd Grin

Long lost lovely grandma thanks for asking, we are doing good. Took you dggs to pizzahut today. We got a few awful stares though. Ds does have a few problems and he's scared of food so I was scoffim eating and trying to feed ds but each time I tried he almost growled at me. To me it seemed like he was doing his scary impression of a dinosaur and it meant the food i was trying to give him was scaring him.

And you know what else I saw that really got on my nerves. There was this poor young man (bit older than me) he had one leg and the other was half with a fake foot and metal attachment. He was happy and had pride. He didn't care or tried very hard not to care about what others thought of him but about 20feet behind him there were 'girls' older than me pointing and laughing,
Wtf that really really got to me, I would of said something but I thought he hasn't because he might not want a fuss so I won't either

Kate I prefer the peg to the button (there are different types of buttons ds has mini button and mickey is a little bigger) I found a link the other day will post it soon

Auntysneez I hope the next few days go smoothly for you and your family. And may your brothers soul rest in peace
Ameen

Hope all the children are well
X
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Isitme1 · 21/08/2012 10:01

www.amtinnovation.com/pdf/AMT_BalloonPatientCare.pdf

This is for the amt mini button. It's pretty similar to the mickey I think
Hth

Hope everyone is doing well
And good morning Grin
x

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2old2beamum · 21/08/2012 21:15

Hi all hope all is well with you lot!
Isitme if I am your DGM how is it Sneezecakesmum is your auntie? Surely she is your greataunt -GreatAuntSneezecake-GAS LOL Grin

Busy day here the world and his wife turned up, thought of removing the front door!!
Re cafe incident I would have been furious but would have just given them a filthy look (I refuse to drop to their level) Sadly this is not unusual so I have learnt to hold my head up high. On the upside have had some lovely comments. Got off train with DD3 (Downs/mixed race 21) wnen a lady came up and said "may I say something2 My heckles shot up "your daughter is the prettiest Downs I have ever seen" May have been patronising but DD glowed with pride!
Sneezecake hope your DB's funeral was OK Remember no one can take your memories away
Sleepwell scallywags (Huh who am I to talk DD awake from 23.30 until 05.15)
XX to you all

Isitme1 · 21/08/2012 21:52

Lol
GAS yup that's a nice easy way to put it :)

It did really piss me off but ah well. They made me feel very uncomfortable as they were being a bit racist too. Not directly towards me though.
Ds is having a late night as he slept during the day in the car.

How is everyone?
Granny how are you?
Ds has been pulling on button while feeding so I still think he's uncomfortable.
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2old2beamum · 22/08/2012 22:31

Not a bad day here both DC's quite cheerful.
DGD didn't realise some racist remarks were made, personally I would have been very tempted to open my mouth but maybe ignoring them was the
better option. Isn't it sad.
Did any one see on the BBC a cat having a PEG !!
Scumbags off to respite tomorrow
Hope you are all well
xx to all and xxx for DGGS

Isitme1 · 22/08/2012 22:40

I thought ignoring them was best as I get an adrenaline high and do what I need to do then I just sit and cry lol.

I'm a very emotional perso Blush
Granny if you lived nearer I would of lived with you Instead of here Sad
Ah well.
Very much thinking about moving out. Far away lol
Might go live with shrek and Fiona Grin
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gallivantsaregood · 23/08/2012 14:19

Hi, Not been around the past few days so just catching up.

Welcome Kate :) Mic-Key buttons are fab. Much easier to manage than PEGs :)

isitme: Am so pleased to hear you will be able to move. It will be such a weight off your shoulders.

Sorry it's just a quick reply. Need to head off and pick DS up from school......

Catch up later this evening :)

2old2beamum · 23/08/2012 21:22

Hi all busy day today my little scumbags have gone to respite for 5 nights and despite feeling guilty I am determined to make the most of it, loads of silly jobs need doing. Taking the eldest to see a Abba tribute band Blush but they will love it.
Dear Grandaughter we do have 8 bedrooms but I am a good Jewish girl but always welcome all. How is DGGS? XX for him
Galli I prefer PEG/PEJ's is it because mine are not mobile DS is fed 23 hrs/day
When our Beautiful Boy had a Mickey the balloon kept bursting, medics felt he had excess gastric acid and felt a PEG was safer and I was hooked. The Mickey however is far more discreet. Hope you are well.
LIE IN TOMORROW no need to set alarm @ 05.45 what a wicked parent
Sleep well all I will Grin

Isitme1 · 23/08/2012 21:42

Hi galli I had something to ask you but forgot Blush

I think it was every week the water in ds balloon is decreasing? Why? Im sure his gastrics put 5 mls in and the week after it was 4.5mls that came out so they put that back in, last week 4mls came out? Confused

Dear granny.
I think at the end of it it doesn't matter who is what but it does matter how you treat others. One of our best family friends is Jewish. He used to baby sit us and we are Muslims.
There are nasty and good in all I think. Thank you for the offer :)

I think the pegs are easier and for me it was more discreet as buttons stick out and you can see it more with clothes on Hmm
Buttons= more work cleaning extension sets and fighting to get them connected

How is everyone

GAS how are you doing

X
what's a lie in!
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2old2beamum · 24/08/2012 21:25

How are you all?
I am fairly chilled with my little scumbags in respite. However letter arrived for DD3 DS,heart probs asthma etc has been summoned for an interview at Job Centre to find her a job Angry but not until October so hopefully appeal will be accepted. Just wish there was a site here I could go to advice.
sneezemumsnana hope you are all OK
New grandaughter you are so right whoever or whatever you are everyone deserves respect and love, hope DGGS is OK XX
Off to see DGC's tomorrow have a slight problem ----have forgotten how to treat NT children worried we may be patronising. How sad is that. They are lovely

Isitme1 · 24/08/2012 21:42

Nice to know your having a chilled time.
You could post In legal and money or something?

Anyone know anything about firstbuy homes? Apparently I can get a new house and only pay 5% deposit and then 75% mortgage or something like that?
If that's the case I did som maths and it's like £360 a month repayments which I can afford and that would be perfect. A new house that's my home.

Hope everyone is good

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starfishmummy · 24/08/2012 21:58

Hi Kate.
DS has had Mic-Key button for 11 years, so I guess that makes me "experienced" with it. If there is anything you want to know, I can try to answer!! Either on here or send me a pm if you would prefer.

I may not make much sense, though, s my "A" key is playing up!!

2old2beamum · 24/08/2012 23:21

Itisme DGD Re housing is this through a housing association I understand you can get a good deal especially if you are on a low income. Round here where housing is cheaper there are some good social housing available but I may be wrong check with your local housing association.
Off to bed no midnight meds and another lie in
Night night scallywags XX

Isitme1 · 25/08/2012 02:56

I'm wide awake Angry
Ds doesn't seem to think mama needs sleep

Past fee days he's been waking up at daft times :(
He has no sleep during day and less than 10 hour at night and guess what
There was a great big spider above my head on the ceiling!
Ewww they go through me I'm petrified of spiders. They scare me so much it's unreal.
I sprayed it with carpet freshner mousse so it should be dead
I feel all yukky and dirty after seeing that. Darent put my Feet on the floor.
Reminds me of the time there was a bat in the room when I went to see dh. It really does give me shivers!
Well I better be off and put him back to sleep.
X

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gallivantsaregood · 25/08/2012 12:19

Happy Saturday everyone,

isitme : great news re housing :) Re the loss of water from Ds' balloon I would say it has a leak and should be replaced. DS has had his button for over 2 years and we have only had 1 balloon burst/leak so it doesn't happen a lot.

However different places have different protocols re changing the water. Here I only check it if the button looks a bit loose. There is a school of thought that says the more often water is changed the bigger chance of the balloon leaking/bursting. Also sterile water or cooled boiled water should be used as the chemicals etc in plain tap water can erode the balloon and cause it to burst. :)

Still in my P.j.s so should really go and get dressed. In my defence I have already showered and sorted several washings. DS was sick last night so that involves actual duvet washing etc......

Isitme1 · 25/08/2012 12:55

He had the water changed yesterday and it was same Amount as last week Confused
I need to see what they say re the homes. The new ones are the ones we can get I hope.

In a very vile mood today. Dh has pissed me off. I don't like waiting to speak to my h. I drop everything to speak to him and I expect him to do the same. I've told him time and time again the only way I can function properly is if I have had a good nice convo with him which isn't happening as some relatives are there and he is being treated like a slave but doesn't see it

It really pisses me off.
I need him to go on but he just doesn't seem to know how much I need him.

:(
Got to sleep after 12. Ds woke up at 2 and went to sleep at 4. Woke at 6 to speak to dh on Skype but he was busy. He said rest for another hour and we will chat. Which I did but then ds woke because of the alarm and wouldn't go back to sleep. Dh said that I'm busy cleaning a fish net Hmm and I said you could of put it on the side to speak to me as i just lost sleep due to waking up to speak to him and still didn't get to speak to him until 8.30ish when I put ds on pump for 4bloody mins. Then he spoke to my dad and said he didn't have time to speak to me Hmm
Really got to me this time.
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NinePeedles · 25/08/2012 14:11

Hello everyone!
My toddler has a mic-key button and has an overnight feed. His latest attention seeking activity is to pull the feed stand over during the night. Does anyone have any tips to prevent this?
We have only recently managed to stop him pulling the mic-key out ( balloon still inflated!)
I am so looking forward to him hopefully not needing this level of overnight feed!

Isitme1 · 25/08/2012 22:26

Welcome nine
Wow he managed to pull it out!!
Hmm the only thing I can think of is using the portable pump bag rather than stand?

Omg it's invasion of massive spiders!!
Just seen another one!!!
shit no sleep tonight then
If it was in my view I would kill it but it's hidingnAngry

How is everyone
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