Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Special needs chat, Parents with disabilities, SN teens, SN legal, SN education, SN recommendations.

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

X

sneezecakesmum Wed 30-Jan-13 20:26:48

Well done galli SO excited to have a new baby (hopefully with normal plumbing and not a puzzle to the medical community) grin It all sounds like there is no stopping it, but still fingers x! smile

Acute glomerular nephritis is, I think, a complication of untreated scarlet fever. ?? I know there are complications (which I kindly didnt name grin) so they should always give penicillin. Yours truly had it as an adult and it was the sorest throat and fever you can ever imagine!! Rant away!

DGS keeps farting and smells awful! DD delivered him to nursery with a apparent fart smell (but was not) and they took him straight off for a nappy change! blush BD is a work in progress!

xx to all

2old2beamum Wed 30-Jan-13 21:07:50

Well done galli I can feel your excitement smile I remember it well.
Hope you are all well.

Wanted to say oldsneeze you make me laugh hope "old fart" is ok mine is being helpful as my hyperparathyroidism is being a bugger at present. Seeing
surgeon next week so hopefully recovery is in sight. Do you think he may expect me trip the light fandango sod off say I .

Hope Giddypants is ok Please do not let DH pack your going home clothes lost count of husbands who forgot trousers/skirts and shoesconfused

Grandaughter are you OK you have been very quiet lately [worried]

Much love to all xxx

Isitme1 Thu 31-Jan-13 10:10:45

Im good granny. Just tired. Spd starting to kick in. Getting tummy ache too
Plus kidneys playing up should of had renal scan but consultant wants it next month.

Well done gali. Congrats! !
Very happy for you. Hope he arrives soon and hope ds is better soon too.

Sneeze made me lol. Destructive nappies smile
Ds is constipated again.
Gastric said that movicol isnt all tht good and hes prescribed docusol.
Hes had it twice and no effect as of yet.
I thought it was like lactulose?
Weve had to slow the flow rate and lower volume per feed but give more.
:|

Start decorating soon ohh yh smile
X

Giddypants Thu 31-Jan-13 19:04:27

I have mostly got all of my hospital bag packed, apart from my going home clothes will shove some in tonight! TBH I'm quite lucky with DH, he's much more organised than I am, he just lacks the finesse and finishing touches! But he's a up and let's go kind of person, (drives me mad sometimes) I'm more laid back and drift into things (drives him mad)
Saw the midwife this morning, she wrote I was measuring correct for dates (she didn't measure me) also I have protein in my urine, which she didn't tell me about, and has repeated some bloods as my white cell count is slightly raised. (Always is even when not pregnant) and I'm starting with DS sore throat/ cough.

DS is fine, apart from the coughing we met a few friends from work today, sounds like either everyone is pregnant or trying to get pregnant!
He's still pooing for England, Ireland, Scotland and Wales! But at least not at nursery today, felt so bad, yesterday he pooed in the car on the way there thought it was just wind blush

galli congratulations on your little boy, my friend has just been approved to adopt a baby, so pleased for her, she can't have kids and is so desperate for them, has changed jobs, given up boyfriends (he was a dick head anyway) and going it alone. She's such a lovely person and deserves something good to happen.

isitme take it easy with the SPD try and rest as much as you can, when are you due?

gallivantsaregood Thu 31-Jan-13 20:59:00

Hugs to the ladies with bumps for the aching and the packing.....I gave obviously missed relevant info but when are you both due? :-D

Hope everyone is well.....quiet/Boring's good

I am off for a girlie night with fellow foster carers tomo night. We get treatment of choice ( massage, reflexology etc), dinner, drinkers and breakfast.... Can't wait. Had a rough week. Had words with DS' head teacher today after she left halfway through his CSP ( bit like statement) meeting to go to a music festival!!! Neither teacher nor 1:1 was at meeting either and she cant understand why any of this would make me feel like DS wasn't important!!!! So diet or no diet (4lbs off in 2 weeks :-D) I will be having a little tipple tomorrow :-D

Hope everyone has a good weekend xxx

Giddypants Fri 01-Feb-13 14:01:45

I'm due march 30th but will be having a section a week before. God what have I got myself into! grin

DS is still pooing its getting a bit runnier, (sorry TMI) I'm wondering if its a bug, his last one leaked out of his nappy and down his leg envy <--- vom!

I'm going to but some scrambled egg down his tube today, no veg just incase.
But today he ate 1/8th a cheese sandwich and 3/4 a small yogurt! So much improvement on nothing!

Feeling a bit rough Elliot shared his snotty germs, (how thoughtful) can't wait for DH to get home so I can go for a lie down!

sneezecakesmum Fri 01-Feb-13 16:08:40

Yep all got nursery snots! Think colds increase runniness of poos so all a bit poo obsessed on this thread!

2old. Typical.. hyperparathyroidism.. definitely a cut above the bog standard hypothyroid us oldies normally get grin. Seriously, hope surgeon can sort something out as sounds a bit scary! I can imagine a throat cutting surgery going on shock NOT something I would fancy.

Isitme. Hope pg settles down a bit for you. SPD this early on is not nice at all. Don't overdo it with the decorating. Just tell the young fart what to do grin Thought movicol was the med of choice these days. ? NICE have guidelines on constipation in children, and may be worth a look?

Galli. Hope you have/had a smashing girlie night out and are all relaxed and chilled smile You will be run ragged with a new babe so make the most of it grin

Giddy has outed Elliot grin (it is a seriously cute name though) Love him!

xxx lovely weekend to all tubie mums xx

Giddypants Fri 01-Feb-13 17:33:46

Ooopppps, ah well !

Isitme1 Fri 01-Feb-13 17:41:43

Enjoy yourself gali!
You deserve it.

Dh has been very gentlemen-y and did 99% of the work himself which includes a full room painted and glossed in 2 hours and carpet and rug washed by hand.
I gave him a peck on the cheek wink
Hes realising its not thay easy being pg and looking after him n ds.

Oooo giddy I bet your excited! ! Elliott is a lovely name.
Im due 20thish of july. Im 16weeks smile
Not felt this 1 move as much as ds did but on my last scan it seemed like I had amniotic bands somewhere on the sac?
Will know more after next scan.

Sneeze dh did most of the work. Its terrible sometimes when ive been up all day (hospital appointments mainly and a n e).

Hope everyone is well x

2old2beamum Fri 01-Feb-13 19:05:30

Grandaughter you have forgotten your Granny grin Glad things are on an evenish keel for you hope little man is ok.

Giddy not long now soppy smile Don't talk to me about poo Last night( the NHS provide a nurse to put LO's to bed X1 week) she showered DD and didn't put a new colostomy bag her, the old one got wet, fell off result a bed full of crap and all over her and her hair Not funny at 05.45. Appalling language
poured out of my mouth!!

Galli hope you are letting your hair down. Keep us posted next week.

oldsneeze yes typical of us dribblies but these bloody adenomas are quite common but GP's are slow at picking them. I was very lucky excellent GP

Have a peaceful w/e ladies confused

Isitme1 Sun 03-Feb-13 09:10:56

Stupid nurse.
I thought I mentioned everyone in my last post.
Sorry granny. How are you x

Isitme1 Mon 04-Feb-13 09:48:54

Hmmm is this the awkward silence lol

Is everyone ok??
Ds has been pretty bad with his tummy. Keeps complaining about tummy ache. Poor baba.
X

Isitme1 Mon 04-Feb-13 09:49:30

Ooo 10-16 feb is feeding tube awareness week 2013!!
X

sneezecakesmum Mon 04-Feb-13 17:47:29

No silence just full of colds and taking to our beds! DGS g ave it to us bur apart from a bit of coughing he is fit and well. I think nursery has given him some resistance to bugs but also convinced the healthy diet has contributed. He is so lively and full of energy and trying to do more its another good reason for BD. but the best is he now weighs 14 kg smile. Back to his weight pre vomiting.

Isitme. I've no suggestions for your little DS he is so complicated and you must be worried sick. Just wish something was sorted out for him. Would drive me mad sad

2old angry re colostomy. Awful for you and poor DD. you shouldn't need to chase around after people.

Feel tired ......

2old2beamum Mon 04-Feb-13 21:05:07

bloody computer contiuation from previous post
school are making gentle barbed comments.
Off now
Sleep well all including all little scallywags
XX

2old2beamum Mon 04-Feb-13 21:08:33

Bloody hell what has happened now who has pinched my long boring post

Will try again tomorrow

gallivantsaregood Mon 04-Feb-13 21:45:37

Hi everyone. GIDDY: Elliot is a lovely name. My DS is LUUK. :-D

Hope all the cords, sore tundra, runny ya and naughty computers are all better now :-D

Night away was fab, but expensive. Had a great time xx

Isitme1 Tue 05-Feb-13 11:05:59

Glad all is well.
think im going to go upto hosp as ive been having pain and no movement but did have movement before that.

How is everyone x

Tootsandblanket Tue 05-Feb-13 12:36:42

Hello everyone, I lurk on this post but rarely join in. It seems everyone is busy adding to families !
I wanted to ask if any of your DC's had ever had Coliform on their gastrostomy sites? A swab has come back showing this on my DDs and having looked into it I feel awful! I have no idea how it got there! I think I am looking for a bit of solidarity so I don't feel so dirty! The GP was definitely a bit judgemental..

gallivantsaregood Tue 05-Feb-13 14:59:02

Isitme: How are you. Everything crossed all is well. Hugs

Toots: Hello and welcome. You are not bogging! These things happen. I learned something recently which has helped. It is none of my business what other people think of me..... Very empowering :-D

Tootsandblanket Tue 05-Feb-13 16:29:41

Nice one Galli I like that alot!
I've spoken to the CCNT who know us well and she has reassured me it happens and she is not concerned by our hygiene standards. Phew.
These gastrostomies are life saving but so hard to manage.

2old2beamum Tue 05-Feb-13 20:43:50

Hope computer behaves

Grandaughter Behave yourself I hope everything is OK try Yes I know it is difficult but try and take it easy. Hope both your LO's alright. Yes I forgiive you for forgetting me sad xx

Oldsneeze just to let you know surgery on 1st March on neck YIPEE
Hope you , Giddy and Elliot are all OK
My morning cry is bloody colostomy not pleasant;
Hope you all have a good night hmm xxx

sneezecakesmum Tue 05-Feb-13 21:39:30

Hello toots. It is my DGS (giddypants DS) ... Yes confusing! who has the PEG. He is 4 with CP. I don't think he has had an infection at the sit but it does get a bit red at times and coliform bacteria are very common in children. Usually a wee infection. Children are not the most careful when it comes to hygiene! And it's even floating in the air! A bit of deximethosone cream sorts it. Did read that these buddybutton things are good but no experience.

Isitme. Hope all is well (worried) ? Pg is not nice imo. I'm in the 'hated every minute' camp sad

Galli. Love Luuk smile DD struggling to find next boys name for soon to be sprog. Your posts are hilarious with all the auto spellings, makes a weird sort of sense and as for 2old s Bolshevik .....bolshie....see what I mean ... Computer!!! grin. Ipad is the same for auto.

DGS still quite loose poo wise. What a reversal! Only just realised the overnight feed has 7.5 g of fibre......no wonder. Will improvise by taking the feed out the bag and putting in 2 bottles of fresbini til dietician reorders plain. Dd thought he had a wee infection but not according to doc and of course he perked up and was fine all afternoon. Neuro appt re Botox tomorrow. Not having any but interesting what will be said.

Nite all xx

sneezecakesmum Tue 05-Feb-13 21:47:59

X post 2old...am I slow or wot ? We are all snotty but ok. Dd is fed up to back teeth with pg! Still 7 or 8 weeks to go. Dont fancy having my throat cut ... Just hope it is not a big OP.? How will all your babies (inc old fart) cope without you keeping all the balls in the air. Can see lots of cooking and freezing going on. Do not exhaust yourself before u go in as u need strength to get better. Believe it or not hospitals are the last place on earth people can rest. I nearly murdered an old dear after one night. Ask for a side room and say you got typhoid! grin

2old2beamum Tue 05-Feb-13 22:28:37

OY OLDSNEEZE alright my computing skills may rubbish but I am an OAP grin Its not my fault computer has a mind of it's own!!!!!!

Bit worried about DGD

Will hopefully be in overnight (or less if I have my way) Yes will have to be a Mary Berry hmm Like the typhoid idea.
How will they cope,.... home nursing team have said they will help....we shall see.
NOW GOODNIGHT off to do meds etc xx

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now