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Gastrostomy support thread no.2! Tubefed children support thread

(973 Posts)
Isitme1 Sun 25-Nov-12 14:44:35

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

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Isitme1 Mon 04-Mar-13 08:30:14

Hes been constipated for 3 days or so but reflux amd not tolerating feeds.
He just looks like hew going to snap.
Gp is crap. Ive emailed dietician so should get reply soon.
He keeps trying to poo and is going small hard bits with overflow.
There are literally drops of urine in his nappy which should be soaking as it was from overnight.
He woke up this morning and kept saying mama poo. Which he hadnt done. Hes now crying trying to poo.
Need to see to ds
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Isitme1 Mon 04-Mar-13 08:48:21

Right he did a small hard blob (again) and overflow plus mucus stool?im sure mucus stool means theres been an allergic reaction in the gut?
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Isitme1 Mon 04-Mar-13 08:48:42

Sorry tmi for a Monday morning lol x

giddypants Mon 04-Mar-13 15:13:43

Does he have regular movicol? Thinks he needs that something extra to keep his bowels moving.
Bowels being blocked makes the reflux worse. I don't like DS going more than 1 day without a movement, and start reaching for the fruit/prune purée to get him going again.
Mucus in the stool is not necessary a bad thing, it usually means that the gut is working or trying to work but there is nothing soft enough to move. Also very common with constipation.
What did the dietitian say?

Isitme1 Mon 04-Mar-13 15:44:14

Hes on docusate which works a bit bettrr than movicol for him. Hes on ot 2x daily.

Dietician has rang and was concerned. She said do 100mls next hour of feed then at 5 do 3 hours of diarolyte. Then give water over night. She will ring at 9.30 to see how he is.
Now it depends on whether or not he tolerates all that fluid.

Ive also got faulty pump and they will send one so we get it today.
smile feel slightly better as now I know what to do. X

starfishmummy Mon 04-Mar-13 16:14:33

Hello All. I have been neglecting this thread - in fact I have been neglecting the SN topic a lot as it has all been getting a bit intense and, dare I say it, ASD focussed.

Isitme - would it be worth trying some glycerin suppositories as a one off - just to get rid of the hard stuff? You can buy them over the counter and there are two sizes for little ones.

Isitme1 Mon 04-Mar-13 16:53:55

Starfish hes already dreading nappy changes and wiping his bottom is a mission. He is trying to get rid of the hard stuff.
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How is everything? X

starfishmummy Mon 04-Mar-13 20:34:18

This is going to sound a bit mad but when we needed to give ds a suppository his community nurse suggested numbing his bottom first. She suggested either asking at the pharmacy for something with lignocaine in it (I think we ended up with a mouth ulcer gel) or using the instilagel we keep in for button changes Just a little smeared around "the business end" helped make things a bit easier as it took away the pain temporarily.

Isitme1 Tue 05-Mar-13 08:53:40

Ooo. Hes had a wet nappy so im happy. Just waiting for a poo now.
How is everyone x

starfishmummy Tue 05-Mar-13 09:02:13

Hooray for the wet nappy and fingers crossed!!

Isitme1 Tue 05-Mar-13 09:21:34

He keeps telling me he needs a poo but cant do it so now its got me thinking maybe packed in as hes been going small hard bits.
Will see what dietician says and what she recommends.
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giddypants Tue 05-Mar-13 13:49:40

Yay for the wet nappy, hope he manages to poo soon.

All ok here had the health visitor round for an anti natal visit, think we are allowed to have the baby now!
DS ok but a bit pukey, but not had a poo yesterday so hoping for one today. Ah well the physio continues.

Isitme1 Tue 05-Mar-13 14:39:58

Hes had wet nappy but skin looks dry and bumpy? He normally has nice skin. Thats on his face.
Glad all preps are going good for baby and I hope ds poo's for you. X

sneezecakesmum Wed 06-Mar-13 11:06:27

Hi all nice to hear from you starfish.smile

SN hasn't got much CP on it but has a long running thread hidden somewhere there with interesting topics. Got a useful response re medication but here is useful and a fb page for blended diet is brilliant.

I've been making buddy buttons as DGS peg site getting a bit red. So will see if they help smile

Isitme1 Wed 06-Mar-13 12:34:54

Buddy buttons oooo. Sounds interesting! I bought a few from America last year.
Atm he has the allhyvn dressing on as its leaking due to weight loss.
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sneezecakesmum Wed 06-Mar-13 19:25:09

Think DD has those dressings too but doing OK with the DIY buddy buttons so far. sad that little DS is losing weight. Wish they would get their finger out and sort this. Dont normally recommend it but if he passes blood again take him to A&E...its a short cut to the specialist. shhh I didnt say that grin

2old2beamum Wed 06-Mar-13 22:36:24

Hi All
No I have not been recuperating on the chaise longue (fat chance). It has been hectic here.
I very interested in buddy buttons what are they? She who knows everything has never heard of them.

DGD is my little DGGS still refluxing? In the past I remember one of mine being on Cisipride it is not licensed for children but it worked when all else failed. And I agree with oldsneeze re A&E.

Hope I don't miss any one out.Paranoia sets in!

Galli hope everything is going ok I found very close contact with foster carers very awkward loooong story but found they did not want to let go. No fortunately Annabel is PEG fed so no force feeding but it STINKS
Starfish welcome back re lignocaine brill no use to us just the opposite!

Giddy hope you are OK

Oldsneeze yes they managed ok minus me. BTW MOI BOSSY HEAVEN FOREFEND grin just bloody organised.
Off to do drugs
sleep well everyone plus little scallywags XX

Isitme1 Thu 07-Mar-13 08:32:08

Granny thats what ds is on down peg.
I agree ot stinks. Last night he was pretty bad with reflux and id manages to settle him and when I woke id seen why he had settled so well. He had opened the end of his tube nd his clamp so everything in his stomach came out onto bed. As you can imagine the stink in my room atm. Hes a clever little thing so if hes learning that opening peg end makes me feel better im done for!

Sneeze hes not had any blood since and hes on and off ill if that makes sense, keeps perking up and then dropping again but wills see what he's like.
Hope all is well with everyone
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Isitme1 Thu 07-Mar-13 19:08:56

Waiting for lift to arrive.
Atm im at hospital as ive been a bit poorly.
Blood pressure is slowly creeping up so they will see me next monday here at hosp and this Tuesday in community so they can keep eye on things. Got nasty kidney infection wee was red then went cloudy yuk.
How is everyone? X

starfishmummy Thu 07-Mar-13 20:07:07

Sorry to hear that isitme. Take care of yourself.

Ds was very brave tonight. We were well overdue for a button change so I did it when he got in from after school club. He decided he didn't want Calpol first but asked me to warm his instilagel, which we do anyway. (His nurse checked with the manufacturer that this is ok and we just warm it in a mug of hot water). The balloon was black and had split so it's a wonder that the button had stayed in!! (Must do it sooner next time). The biggest wobble is that he doesn't like me wearing gloves - I only use them for button changes or I end up with numb fingers from the gel!

2old2beamum Thu 07-Mar-13 20:45:43

Hi all
Am at the stage what are we doing sad
Older 3 all with snots/chest infections 2 on antibiotics 2 LO's very snotty old fart not much better.

DGD I have been thinking (dangerous) if reflux is a massive problem why don't they consider a jej tube DS has been so much better reflux wise since then. Just a thought much better than drugs IMO Love to little man XX

Star I am so glad no tube changes here.

Hope al lof you are surviving

Sleep well all

sneezecakesmum Thu 07-Mar-13 21:22:28

buddy buttons! Sorry 2Old you are in the house of snot! One gets it and everyone goes down. When DGS gets a nursery snot we are all sunk! Giddy is still coughing from weeks ago. Hope I dont speak too soon but no nursery bugs for a while...famous..la.s.t...wo...!! Think it may be BD making him healthier all round.

Isitme. JJ tube sounds like a good idea. why dont you discuss it with the gastros next time, your poor DS must have no stomach lining left sad Giddy saw the mw and all is on track at the moment. One day the head is engaged and she is moaning about peeing every five minutes, then its out again and she's moaning about heartburn grin Shes def reached that 'GET IT OUT' stage!

DGS should have a button fitted in about 6 months time shock and horror. Just about got used to the dangly tube. We will be needing more advice soon and as for changing it starfishmummy...I shall run screaming for the hills! On a good note the letter from the neuro arrived (4 bloody weeks!!) so now its on to GP (nag nag) for a prescription then (nag nag) the pharmacy to order the medication. I am not the most patient of people! grin

starfishmummy Thu 07-Mar-13 22:07:58

Sneeze - when DS first had his button I felt the same but I started changing it from the beginning and it was a doddle compared to having to completely pin down a thrashing three year old and ram an ng tube up his nose!

There was a wobble a few years ago where we were back to two of us having to spend half an hour trying pin his limbs down just to get the instilagel on; after that he would quieten down and it would be fine! But then a play specialist worked with him - and that was when we found that he didn't like the instilagel because it was cold, hence warming it up! He also sometimes has calpol first, but he isn't keen on taking it ever (even when he is in pain from his scoliosis)

Tootsandblanket Thu 07-Mar-13 22:14:46

Buddybuttons look great. I think I will be ordering some.
DD is due a button change - well it's overdue. But we've never had instilagel- I will be asking our CCNT about this tomorrow. We were told just to 'pop' it in. Ouch. I dread changing it.
Sending positive thoughts to the snotty chesty people and the pregnant ladies too.

Isitme1 Fri 08-Mar-13 08:51:50

I hated the button. Thats where our leaking problems started and he had his changed that many times (on1 occasion they had to yank it out because it wouldn't budge) he hated it and putting extensions on was a pain as he thought itwould hhurt him. Much happier with the peg. Will ask his gastric about j tube but he is a bit lapsy daisy he doesnt (imo) give care upto the same standards as dr Thomson did but hes in Sheffield and getting there is the pain for me due to being pg and these problems.

Button buddies do look nice and can cheer the dc up.
Granny I hate it when a cold is going round. Its yuk!
.

Giddy I can imagine how your feeling last few weeks take the piss.
Sneeze once you get the hang of changing button it will be easy never got to that stage myself I did do weekly water changes though
Starfish thats one brave dc. Bless. X
Hope ive not missed anyone x

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