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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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OP posts:
Isitme1 · 31/07/2012 21:14

Lol old timers disease lol
I like that Grin
I think a comedy is in order tonight to shift this horrible mood
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2old2beamum · 31/07/2012 21:15

Senilesneeze GrinGrin

Tooloudhere · 31/07/2012 21:37

Yes this is defineately an antique phone, it will do until contract can upgrade the flushed phone.

Isitme I was going to mention the buried bumper especially as you said there was blood ( I have been good and reading back). We go to one of ds hospitals on train, I find it easier than going by car but it is right in the middle of a big city centre.

Ds is still at status crap and nobody seems to think that is going to improve mainly because they don't have a clue what to do to improve it it is not good at the moment.

Dh is in the old fart gang he is going to make such a great old man, me I pretend to be a grown up but still don't think I am!

Isitme1 · 31/07/2012 22:13

Can't wait til he goes In so he gets sorted but I'm scared for him.
He's such a little mite.
Better download some crap to watch on the iPad
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2old2beamum · 31/07/2012 22:20

Tooloudhere can my Old Fart join your Old Fart Gang mine is already an old man, he is younger than me but like you I act my shoe size (not continental)
Goodnight all LO's please sleep, no seizures and no pumps alarming
xx

Isitme1 · 31/07/2012 22:39

Good night everyone
More moaning tomorrow Grin
Night senile1 and senilesneeze :)
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Isitme1 · 01/08/2012 12:09

Train ticket booked.
Not happy about having to go on train Envy
But it's tough.
I will have to set off at about 8.45am latest.
How is everyone
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2old2beamum · 01/08/2012 15:31

Itisme goodluck for tomorrow hope you get some answers.
Flew to Manchester with DS plus wheelchair on my own nightmare, he pooped his nappy just after we got on the plane.The dirty looks we got were worse than the smell Blush
Take care x

Isitme1 · 01/08/2012 20:09

Thank you very much

How are you senile1 :)
Hope everyone else is good too
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sneezecakesmum · 01/08/2012 20:16

2old. Feed poo smells horrendous! It has its own stink which we have had to get used to, and its runny! DGS today scoffed one of my homemade ultra fatty spag bols. Gob was opening til the end! We have definitely stretched that tiny tummy!

Isitme. special good wishes for tomorrow. Hope it all goes well. If you see this in time download :- tellytubbies, waybuloo, night garden, timmy time. (if he likes those programmes) brilliant ipad apps - interactive, so keeps them occupied.

Tooloud. Hope you dont mean your DS is fitting all the time? That would be beyond horrific. Sad

2old2beamum · 01/08/2012 20:35

Sneezecakesmum I strongly suspect Isitme refers to us as senilesneeze you and me senile1 cheeky monkey Smile
DS had neuro assessment today consultant agreed with me and has left anticonvulsants alone for the present,
Hope you are coping OK x

Tooloudhere · 01/08/2012 20:48

The train will be fine, I hope the appointment goes well.

Ds is not fitting all the time, he does have fits though. He is getting new issues and the ones he has are getting worse which is why I said it is not good. As he has no overall diagnosis we are very worried about these developments.

2old your Dh is welcome in the old fart club I bet they have loads of fun not I drive him crazy sometimes not being all sensible and boring.

2old2beamum · 01/08/2012 21:07

Tooloud I wonder if our DS is similar to yours. EEG does not show status but loads of epileptic activity. It is not nice but we know we are unable to cure him but manage him--bloody meningitis

Tooloudhere · 01/08/2012 21:34

That's it though everything is just about managing symptoms, I have not quite come to terms with that. Especially when I don't feel as though it is being done effectively.

Isitme1 · 01/08/2012 22:52

Yep I'm talking about you2 (tooloud are you also senile like the rest of us lol)
Senilesneeze
Senile1
Senile2
And senileloud Grin Do you like my list?

I hope I've packed everything!
Ds clothes
1pair for me
Nappies wipes
I need to remember chargers phones ipad pads brush and tooth brush +paste.

Im not 100% sure ds will be admitted but I can't take chance as its 2 hour drive for parents to bring stuff up.
I have packed a bag just in case they come up and we need fresh clothes.

Ive downloaded spongebob, Tom n jerry, mickey mouse and jake and the never land pirates (on iPad)
On iPod I have a lot more - the wotwots, Charlie and Lola, jungle junction etc

How is everyone and dc?

Tooloud I'm sorry I can't help in any other way apart from being here to listen to your rants hugs
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Isitme1 · 02/08/2012 06:19

Morning all.
Ds was a pain last night. Because he had pain last night.
In the end he went back to sleep at 2.30.
He had pain in his right foot? And knee and he was refluxing too.
you should see the bags under my eyes! Bigger than tescos!
Hope everyone else got a better nights rest
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Isitme1 · 02/08/2012 15:37

I'm home :)
Ds was brilliant on the train
Travelled first class. for an extra £8
He's going in for biopsies p, endoscope and change of gastrostomy. From peg to mini balloon
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sneezecakesmum · 02/08/2012 19:24

Isitme. good and bad then, good he is home but a lot of crap investigations and hospital for the future. Funny DGS loves trains, but only been on those fun steam trains chugging and puffing away!

I'm always confused with this thing of children not having a diagnosis, but the more you read the more unusual syndromes there are. I think knowing there is a label to the symptoms gives you an idea of the future.

2old. we are like isitmes grannies, toothless and senile Grin My DD said to me today when I was pulling DGSs trike up a hill, nanny cant go up the hill again she is too old! He loves to pedal down and speed up so I have to do it. DD is pg but dont tell anyone its a secret Bring on the worrywortism again!

2old2beamum · 02/08/2012 21:07

Isit me itis senle1 here! Glad everything went OKish today but investigations drive me potty it is always maybe or perhaps and you land up no further forward On a more serious note you said your LO had pain last night, what type of meningitis did he have? Was it menigococcal or pneumococcal, Jay had pneumoccal and septiceamia and at present pain is the biggest problem one paed had the audacity to say it could be behavier Ha bloody haJust a thought to pick you brains xx.
Senilesneeze I am sure I could yy be Itisme granny and your mum tooGrin Oh my god that will make me a great grandma. Congratulations to you and your old fart on the conception of DGC try not to worry too much and get knitting
BTW I AM NOT TOOTHLESS OR SENILE but I may pee myself xx

Tooloudhere · 02/08/2012 21:14

Isitme glad you have a way forward from the appointment, at least you can pack and go in an organised way I hate taking half a bag to appointments incase you are admitted.

Congrats on dgs cooking, guess you are on trike chasing duty for a while then?

2old I think you are old enough to be my mum but not my gran I seem to remember you posting an age a while ago. I am defineately too young to have senile in my name though and I only wee a little when I sneeze I blame that fully on having too many babies not my age

2old2beamum · 02/08/2012 22:06

Tooloud or senile2 as you are known to us (blame Isitme) I am only 35Grin my continental shoe size. I can give you The Tena Lady number. How many LO's have you had, I have had 11 but only 3 by doing rudies

BTW what do you take with you in an emergency if your DC is taken into hosp by school (only3 things)
Me Knickers
Toothbrush
Kindle
Sleep well old seniles and very young Isitme

Isitme1 · 02/08/2012 22:32

I heard button balloon thingys fall out more so a little worried!
grandma senilesneeze I won't tell if you don't Thanks
Congrats :)
Who has a balloon button thingy?
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Isitme1 · 02/08/2012 22:35

Xposted sorry
:) I'm young but capable lol. that's what I tell myself

Senile1 your list sounds perfect to me
Very important things should be left at home Grin
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Sneezecakesmama · 03/08/2012 09:57

2old. Not old enough sadly to be my mum as I have just retired! Hooray. Freedom! But I am young in my mind (what's left of it). Isitme no idea re buttons ! We are still novices.

Tooloudhere · 03/08/2012 10:22

2old I see your game, if we go by continental shoe sizes I am older than you, sneaky.

You can all guess how many children I have, the winner gets the cheekiest one for the weekend. There are not that many really but all our own doing. 11 is very impressive especially considering you adopted some.

I keep a small baby changing bag in the car with stuff for an emergency admission, it contains change of clothes for ds and pjs,nappies, wipes, knickers, toothbrush, toothpaste, miniature showergel and shampoo and a fiver. At home there is a hold all packed in ds wardrobe with enough stuff for a few days, Dh can then bring this in I learnt the hard way to do this to not to send him home with a list. I once asked him to bring me in some underwear, I didn't really expect to have my best (rudest) underwear brought to the hospital. He said he couldn't win whatever he chose.

Isitme, mini balloon button things are fine, we haven't pulled one out yet they are neater when not in use but you do have to remember the extension sets.