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

[Isitme1]

I'm going after his pump finishes to the walk in centre to get urine checked. He's had urine infection in the past and I'm a kidney sufferer so I know how much these hurt.

Sneezecakes you can come and spoil us lol.
We've only got the 1. Quinny buzz 3. Love it apart from handle won't go down
I'd love a stokee pram or bugaboo :D lol
X

[Isitme1]

Yep he has a fair bit if water. He doesn't really tolerate it too well when it goes in. If I do bolus water he's uncomfortable and if we do more flushes he's not as bad as he is with bolus but still in pain.

X

[2old2beamum]

Isitme poor little chap it does sound like a wee infection hope the centre sorts him out. Wee infections are awful
BTW thanks for Indian/Pakistani remedy. Used to live in the East End but we now live in a very predominately white area (the only mixed race peron is our DS) so no one to ask.
Did I have a good night no dearest darling daughter managed to disconnect feed what a mess and Eau De Peptisorb is not my favourite perfume.
Hope you are all okish XX

[Sneezecakesmama]

Rosie. He's got a SN one too, swifty! Think I have a problem with buying stuff for the DGS to make up for my DCs being deprived of material things as I was a sahm as I was better for them than a world of stuff....I hope . Latest one is a phil and teds smart buggy...small enough for a Toyota aygo...that's my excuse! Would love to spoil everyone to make up for all the worry SN causes!

Dgs sits fairly well in most buggies apart from extending his legs and ending up sacral sitting. Just tip him up and shake and he's right again!

[Sneezecakesmama]

2old. You sound like a late friend of mine. She adopted a DS baby with such serious heart problems she was not expected to live. A mixed race Afro Caribbean girl, a mixed race Asian girl and a boy whose parents both had mental health issues plus 2 of her own. She worked full time, studied for a masters (said it took her mind off all the hard work at home!) smoked like a chimney and had a heart as big as the euro debt. Her DS girl made it to 26 then passed away and my lovely friend had a brain haemorrhage and died a month later.

So......I hope you are looking after your health and not putting your family's needs first all the time. I can advise you as I am a nurse and a gran, and it entitles me to lecture and be smug !!

[2old2beamum]

Ok Sneezecakesmama don't lecture me I too am a gran and a nurse kids, adults and midwife (I was at my 1st adopted son's delivery so I blame him soppy how our lives have changed
I will now give you all the history I will say this only once
3 homegrown ---flown the the nest
Adopted aforementioned DS with DS thought wouldn't be nice if he had a brother like him so along came no2 sadly he died at 16 months. At funeral his SW said we have a 3month old with DS she too had heart defect now repaired but still problematic (pacemaker) Then ?why came no 4 beautiful little girl ds and heart problem. THAT WAS IT
DS made redundant so decidedto adopt complex needs child so along came no5 sadly history repeated itself she died at 23months. We were then approached to take Stef and I said OK as long as he didn't pop his clogs on us.
After struggling for 10 years, 5yrs on TPN he too died it was horrendous.
Then along came no7 (very hard decision)but am so glad we did as all agencies had let him down (post pneumococcal meningitis deafblind etc)
front door now locked haha 4yrs ago 'phone call we have a dear little girl no one wants her (Emanuel Syndrome)----rest is history have now thrown away front door key
You can all wake up now
Yes I do take care of myself but have ?hyperparathyroidism
Always read your posts interesting and helpful so pleae keep them coming.
meant to say earlier sorry about your friend life is a bitch,regards to your DS and DGS he seems to be doing so well. Never written such a long post X

[Sneezecakesmama]

Omg 2old think you are amazing. Bet you hate people saying that! Can't imagine the awfulness of losing 3 of your babies, everyone's worse nightmare. You can cope with anything so long as they are still here with us. Surprised you are not mum of the year. I am a rank amateur by comparison. A mere 3 years of a fairly straightforward CP ( if there is such a thing) !

Keep on posting as you have experience in practically every area of SN as well as NT children and it's this depth of experience which helps everyone to cope on a day to day basis. Def no more children - though I think SWs always have got you in their sights!

[Isitme1]

2old you really are an inspiration! {hugs}

Please do look after yourself


Went walk in centre at 1.30
Just got home
I walked in gave details and asked for urine collector. Put it on him and he wee'd in it pretty quick. ( had feed hour before we left plus lots of water lol)
He has infection.
Had to go out of hours gp
Horrible wait there
Ds was hungry but wouldn't eat anything we had.
He was due pump Feed but didn't have it with me due to leaving home at 1.30 thinking I'd be home by 5 lol.

All pharmacies were shut :|
Had to go into town to get his mess
X

[Isitme1]

The doc thinks ds is starting up with what me and my mum have:
Kidney probs.
He's had 2 uti's in 5 weeks.
Plus protein in-between.
....
X
How much water does everyone use(flush) / give during day?
X

[Tooloudhere]

2old you sound like an amazing parent, what an lovely thing you have given to your children. I imagine also they have given you in return, I know all our children do but ds especially has shown us a lot about life.

Sneeze I have pushchair issues here too, I have got through a lot. I have always been an intuitive parent I hope but some professionals are making comments about how I can't carry him around forever, which I am aware of but he needs it now so I carry him a lot. They think it would be better for him to seat in his nice seating system alone all day, umm I think not. In the next breath they say how much progress he is making and exceeding expectations of him, well done mum. Geeze let's put two and two together somewhere.

Isitme, we don't do big flushes as such as he just cant tolerate it, he doesn't really tolerate what we do put in. Ring the dietician., I know you said they are on holiday but ask to speak to anyone in the office and ask for then to look at your sons notes and see if his fluid levels are ok. If you need to stamp your feet, I am good at that but it works!

[2old2beamum]

sneezecakesmama you are right I'm just a mum like you and losing my babies was heartbreaking I will never get over it, there will be no more
Thanks for your kind words now shutup.
Itisme sorry about LO's urine infection but am so glad you are getting it sorted out but what a palava. Re flushes would he tolerate 30mls before and after each feed or even 40 but would be inclined to start slowly. Or would he tolerate a bolus between feeds it may be a case of sucking it and see, fingers Xed he isn't sick
Hugs to you all. Hope you and yours sleep well.
for your friendship

[2old2beamum]

sneezecake meant to say i hate people saying oh you so blah blah blah
SorryX posted with tooloud she is right if he can't tolerate it x

[Isitme1]

I will increase slowly by say about 2 mls each time to see what he can tolerate.
He can't do feeds fast or water. Could I use a giving set? Say if I put like 5 oz in and hook him up for 1/2 a few times a day?
X
Your amazing
:P

[Tooloudhere]

Isitme, if you have a gap between feeds (I don't know if you bolus or continous) see if you can get an extra water bolus in or just sneak up the amounts gradually. Trust your instinct as to what will work, you are his mum and know him best.

2old I will cut the sloppy admiration for you, no offence intended.

Night everyone, here's for a quiet one with not too many pump alarms and defineately no bed feeding.

[Isitme1]

I'll drink to that!


He has gaps yep. We do 4 1 hour pumps a day
X
Night
Hope it's a calm, restful night tonight for all
X

[starfishmummy]

Isitme - my ds has a history of kidney/bladder stones so we have to make sure he has a lot of water. Hes now 13 and drinks it, luckily; I'm trying to remember how much he had when he was small. It was a very high amount - but his paediatrician consulted with a kidney specialist and they worked out what he needed.

We gave it to him as large flushes with his feeds and medication - so he has (still) a 50ml flush before and after his two tube feeds a day; and 50ml in total with his meds, also twice a day. In addition I was giving him extra water through his giving set - probably twice or three times a day before he started school, in between his formula tube feeds. When he started school we cut out most of the water "feeds" and with permission from his medical team we added the water to his formula.

[Isitme1]

Thank you starfish
It's so painful having uti's and kidney probs.
I was in hospital atleast 1 a month due to kidney probs. I used to call it my second home lol.
He's just about completely refusing food.
He will put crumbs under his dummy and if he does put food in his mouth he chews and spits out.
I was thinking last night, ds has had peg in 2 months and in the 2 months he's been on antibiotics 6 times.
For peg site infections, tonsillitis and uti.
He used to suffer very badly with his chest and recurrent chest infections but since he's had the peg he's not had1 infection! So to me that means he might of been aspirating?

Good morning to all
x
Hope we all had A good night x

[rosielum]

isitme, my dd is nearly 3 and she gets 3x bolus of 120mls water a day and 60mls of flushes with food/med and she gets 3 feeds of about 200mls that works out to about 1000cals. sounds like a swallow study maybe useful too? hope to catch up on everyones posts later x

[Isitme1]

Thanks for the info.
They tries doing swallow study( video fluoroscopy)
But he wouldnt eat no food with the barium on.
He's had the barium swallow as a baby- confirmed reflux.
3 months ago he had ph probe done and that showed even with his meds he's still refluxing atleast half of the day.
Seeing his gastric team on 21st
X

[rosielum]

yeah i didn't both taking my dd for swallow study as i knew there was no way on earth she'd eat/drink any barium! not too long to wait till the 21st at least x

[Isitme1]

Yup.
I'm going to ring through to salt and see if they have any more suggestions for me to try.
He's as light as a feather and me and his dad are both good sizes ( well his dad is built but I'm just fat. Even as a child I was lol)
X

[2old2beamum]

Itisme with DS they did not bother with a video fluoroscopy he just refused to eat. Mind you I think they wished they had as they would have discovered his stomach was in his chest cavity Surgeon and I now are able to laugh about it.
Hope everyone is OK me big tidy up as back to school

[gallivantsaregood]

Hi Everyone!!

We are in the rebel gang too :) DS has been tube fed since birth. NG for 5 years (pulled it out only twice in that time!) then peg then button. He is now 7yrs old. He has a very complicated anatomy and lots of different medical issues but no umbrella diagnosis. If you saw him you probably wouldn't think there was anything wrong at all but he is completely tube fed.

He spent most of his 1st 5 years in hospital and has previously had a really tought time with his health.

Since Nov 2010 he has been having blended food via tube too and it has made a huge difference to him. Prior to BD he was fed continuously over 20 hours per day! Now he has blolus feeds and an overnight pump feed which is real food too :)

He is healthier, his bloods are now 'normal' and were previously all very abnormal. We have stopped 4 medications and he is far more resilient than ever before :)

I haven't had a chance to read the whole thread yet but just wanted to say to Isitme1 that you said you had thinned down a jar of baby fruit - just for info, you would manage to give the baby fruit without thinning it will plunge very nicely :)

Anyway that's a quick into from me and will be back later to read the rest of the thread :)

[rosielum]

gallivants are you on the blended diet uk facebook group? my dd has been on blended diet for the last 6mths and i can't say enough times the difference it has made to her, she is so healthy and happy (now that her constipation/reflux is resolved). welcome to the group :)

[Isitme1]

Have a nice tidy up 2old!

Hi and welcome to the club gallivant.
Do have a good read of the thread we have had a good time here

sounds like you've got your hand full.

Thanks for that advice.
I've just bought some chocolate pudding baby jar from local shop as I know he's not putting weight on he just feels so light it's unbelievable.
We are all here when you want to vent or just chat about what ever
X
Hope everyone has a good day.
Ds playing up
Biting everyone I better go and stop him lol
X