Gastrostomy/ tube feeding support group...

[Isitme1]

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

Isit. Sounds like a plan! At least something will get done but they don't seem massively concerned so I hope it goes well.

Sadly my DB died today. He had cancer which went wild really quickly, but his lovely wife had him at home and was there. So shit as he went blind many years ago from a rogue virus and he coped with that. No kids either. Just doesn't seem fair. Life isn't though. SIL has loads of friends nearby so will be supported. 3rd funeral this year after MIL and friend. Just wish life would be on a more even keel. Everything is so in turmoil since DGS was born. It leaves you on edge waiting for the next blow to fall. Was expecting DB to go so not a shock at least. X

Sneezecakesmama I am so sorry about your DB it must have been horrendous for his poor wife and the rest of the family, cancer is a bastard

Isitme glad to hear your LO has a quick appt. Train is good very relaxing even with DC's. Hope all is well with you
. Managed to give lounge a good clean today I feel quite proud of myself smug

I'm so sorry for your loss hugs even If you prepared yourself it's still not easy. We can't do much here but we're here for you

Ooo sounds exciting lol
It was my 3rd anniversary and we both forgot!
We remembered last week though lol and today there's been a few family probs so we have been caught up in it all

Can I take a pram on the train
X

Feeling a bit sorry for myself today, but with Sneeze's loss, it seems a bit petty.

I have managed to have the broken bones in my foot become infected. Trying right now to avoid going into hospital, but not sure how much longer I'll be able to put it off.

The kids, however, are doing well. The "campout" with dd went pretty well Saturday night, and ds enjoyed having the house to himself.

Dh still has his "man cold"... at least I am off the hook for making a special anniversary dinner tonight

Thanks girls. I'm ok just upset for SIL as they were almost childhood sweethearts and have no children. She has lots of good friends but I know she will be devastated. Also lives about 4 hours away so cant even pop over for a cuppa without a major journey. Cancer is shite for sure.

To top it all effing ed psychologist wrote in DGSs statement severe learning difficulty, around 6 months of age ffs! Both physio and OT said he is a bright little boy. DD crushed. (can he stack 2 bricks,? can he TELL you colours) FFS hes got cerebral palsy which affects his speech! He recognises numbers, follows instructions knows the difference between a hippo and a fecking rhinoscerous, knows colours, shapes and so on. DSonIL is livid too. Writing DGS off before he's started. Let me at them, I am in the mood for a fight . Rant over its been a shit day so may as well rant!

Fecking cancer, fecking CP! Feel better (ish) now and glad I can let off steam and you are all lovely and don't mind. Sleep tight xxx

Ed psychologist met him for an hour and just asked questions. Physio and OT known him 3 years.

Beemom hope your bones heal soon!
I fainted when I was pregnant with ds and I had 'the feeling' I was expecting. My ankle came out of place and I had it put back together with no pain relief at all very worried about that stuff in early days
I was at my hubby's home land and we didn't have a car either so some guy said get some huge leaves boil them in oil and wrap them around the foot.
It worked! (after he put it back in place)
Hubby had to carry me up the stairs lol --I'm fat lol so it was hard) he has a villa and the bathroom was accessible on a computer desk chair Lol I would go riding down on the chair!
The good days lol

Sneezecakesmum let it all out not literally
It does help!
Dgs doesn't sound like what they saying
He sounds like a little star! I dont get their problem!! stupid twat
(ignore them)

2old and galli where are you?
X

Can I ask how old dgs is?
Ds is 2 in a month and
He only just says mama, hi, bye and nice.
He doesn't say 123 or know colours

they expect a lot from little ones
X

Beemom happy anniversary to you and your dh.
Me and dh have been married 3 years today and were still waiting for his visa to come through
X

oldsneezecake just thought you might be encouraged by this. When I was a very young children's nurse we had a lovely patient Cynth aged 5 who lived on the ward She had severe CP non-verbal and was awful to feed, We force fed her, when her weight started to drop she would be tube fed not with a nice soft tube but a bloody great rubber thing rammed down her mouth. As she was so slow to feed she always had her meal 1st off the trolley if she didn't get it 1st tears streamed down her face SHE KNEW SHE WAS GOING TO BE TUBE FED she was not daft. Move foward 2 years she moved to a special unit and surprise surprise she had sat in the hospital and taught herself to read. The last I heard she was doing a degree in law. Moral never never underestimate these children.
Isitme sent you a message @17.40 XX

Nope I got no message :(
I have just sent you one though :)
doesn't say much just I didn't get your message
X

You scatterbrain your nearly as bad as me

Still got no message lol
ds just farted and he's fast asleep lmao

he's asleep and in no pain I'm not complaining though! It's nice to see.

Oops spoke to soon he's starting to stir...
X

My one message for those who say "severe learning disabilities" or other such crap... in virtually all reports from dd's neuro, the first paragraph has the words "cognitively impaired"... well, she goes to a [http://snsherpa.blogspot.ca/2012/03/blue-roses.html school for severely disabled children] because the regular schools can't serve her... and at the end of this year, could read, add, spell etc at grade level. She can't draw a line, speak a sentence verbally, kick a ball or run a lap, but damnit - she is hardly the vegetable that her neuro seems to think she is...

That is the case for all of the kids in her class - they are there for different reasons, CP, seizures, genetic conditions, down syndrome (there are 38 students total in the school - a max of 8 in each class) but the school has found the "child" behind the "disability" for each of them... the school demands a lot, but these kids rise to the occasion.

As for the reports - I look at reports like those as a way to possibly not have to fight tooth and nail for what dd needs to succeed. While I don't "agree", I do see the benefit in them and haul them out when I need to "pad the argument" to get support for her.

Unfortunate, but true...

Sorry, the link was supposed to be this one

Hello all, I am new to this thread, hope it's ok to join. My DS is 3, and has a PEG tube due to unsafe swallow, lung issues, reflux, etc. It's been in for 2 years, and he's due to have it changed to a button. Surgeon wants to discuss it with us first, we think, due to risk of anaesthetic, DS lung's are not good. We're reliant on the tube less and less, DS is eating orally now so hopefully it will be removed in the next year or so. I think we'll be advised to keep the tube in till then, and not bother with the button. Assuming this is the case, we need to deal with the issue of it dangling down, getting caught and gettting pee'd on when he uses the loo! He's a bit phobic about it, and too independent to let me hold the tube out of the way. It sounds trivial, but it's becoming a bit of an issue, and he's having toilet accidents, which upsets him. I wondered about cutting the tube so it's shorter? Has anyone done this? Or does anyone have any better ideas about how to keep it out of the way? I thought about taping it -but what to? His t-shirt? Or the plate that holds it in place? And what tape would I use? Hopefully someone can help! Thanks.

Personally we did shorten DD's as the connection became loose---no one knows though and only by 5cms.
Btw welcome to this thread as I said before they are all daft 'cept me.

BeeMom am thinking hard about your comment SLD and agree with you, however DS is deafblind,CP epilepsy he has a few on-body sign language and that is it. His pleasures are simple wind and rain on face, onbody rasberries and ofcourse farting (lovely sensation ) How can we describe him. At school he is in the "preformers group"

Sneezecakesmum hope you are OK X

Hi, I am back. A few nightmare weeks in hospital with no Internet due to me dropping phone down loo (contract phone no less so have borrowed a basic one that only makes calls who knew they still existed), a holiday which was nice but never relaxing with kids and here we are.
I will read back and catch up I hope everyone is ok though well ya know getting by!
To hamleysmum above, if the peg requires ga to remove now or in a year when you don't need it I would be tempted to ask that it is done now and changed to a button so your dc can benefit from the improved quality of life ( drs tend to agree more when talking in those terms) a button can be removed whenever so will only be one ga whether now or later.

Hamleysmum welcome to the group. 2old is right we're all daft :) in a good way I hope

I have no experience with shortening tubes so I'm very sorry I can't help.
Has your lo had the same tube in for 2 years?? I thought they needed changing every 6 months?

2old I no longer require assistance on trained
My parents are taking me nice easy car ride

I got a phone call today which really p'eed me off!
Gastros at Manchester children's rang to see if I still wanted appointment and I said well in the time it's taken you to get back to me ds has had gastrostomy put in, investigations done and hopefully changing over to button. Stupid idiot. It's taken 2 referrals (done in January and then feb) and 7 bloody months before the bastewards bastards got back to me about ds! In that time if we would of waited my dc would not of been here!!!
He really really REALLY got the wrong side of me!

In lighter news I spent
Wait for it....
£44 on myself
I wanted a new dress for the hosp appointment

Hope everyone is good
X

[waves]
Hi tooloud!
How is your lo now??
I did ask about you both
Hope your both doing good whatever that means lol
X

I'm convinced ds disk on the inside of the peg has moved
His tummy looks different
He's pooing more
He won't let me even touch his peg to clean
Only 1 day though now
X

Itisme just hang on in there. Has he got a Mickey or a PEG Senile can't remember. Perhaps Senile could be new name.
BTW I think Galli has gone to Holland looking for the sun perhaps hopefully (not Holland just sun)
Tooloud hope everything is improving

He's got peg in.
He's fast asleep now but was in pain before sleeping.
I keep thinking it's something I've done but I know it's not.
I've been extending tube in tummy like they said I had to (once a week) to prevent buried bumper.
Last time it was pretty hard to do so in the morning bur managed at night
I feel very guilty atm but then again tubes are the way forward lol
X
Thank you 2old
X
Oooh yeah galli went to holland for some sun for the last week or so of the holidays
2old you be senile1 I'll be senile2 sneezecakesmum can be senile A
x

2old and Beemom. thank you for your encouraging stories. I truly believe DGS has normal intelligence but meets the carriculum at nursery at 2 year old level. He is 4 in september. It was all tick boxes. Of course he cant fully access the cl his hands dont work well and he functions at a lower level because of his physical limitations. It was only OT and physio who recognised a bright little boy. The whole statement stressed the negatives and we think they are trying to ease him into a special school. Maybe its us being paranoid. The HT of the local primary wants him to go there, but this rotten report may scupper it all. It shouldnt be about what he can do, but about his POTENTIAL!!! He loves interacting with NT children and the HT at the special school said he was too able to go there. We will fight this. Read all about fighting on SN site and never had to do any til now. These people need to read your stories about CP children and rethink what they write! DSonIL is on the case.

Hamleysmum. Hi We tape DGS tube near the PEG site to the skin with special non allergic tape, to anchor it but no idea re cutting. Dont see why not though provided its only a few centimetres.

BeeMom get your foot sorted asap. Osteomylitis is dire honestly!

Isitme. Congratulations on new dress. spending money on yourself is one of the best ways of cheering yourself up. I hope the appointment goes well and thank heavens for a lift down there. Going by train with a lively toddler is anyones idea of hell! I went to manchester by train for my eyes and I wanted to shoot myself I was so frazzled!

Tooloud. Hope you and LOs are well. My old fart has a phone from the Ark. A teenager called it an antique!

Not seen any PMs

xx

x posted! Gone to Holland. Probably because of that poem! Ive been there to a market but it was donkeys years ago!

I am not senile..... I have old timers disease.......Say it quick and you will get it!!!