taadaa shiny new gastrostomy support thread no.3 tube feeding support

[isitme1]

Taaadaaaa
Welcome to the new thread! !
New and old are welcome here

I hope everyone is just busy with the nice weather

Yes we have been out and about!

Going to a Bollywood themed party on Friday

Hope you get a few answers. Is DS1 is on the spectrum is there a diet that can help with the constipation? This is unknown territory for me.

Dont have a clue yet sneeze as its such a broad spectrum. Gp said its over diagnosed amd gastric said it makes sense? would be nice if they agreed on something!

Passed driving test yesterday! Very proud of myself for it! Instructor sat in the back and she said it was such s good drive!

Congratulations DGD It will be so much easier for you!

Apologise for absence but computer has crashed and am using OF's and he doesn't like sharing. Must admit my computer is mine My little computer man is away until June 3rd he will be in trouble when he gets back!!

Love to all scallywags

Congratulations. Ilovemonsters! Really brilliant. Life will be so much easier now and especially with the baby brain going on! Xxx

Thank you x
well I went driving yesterday and stalled 7times as the clutch is different on this to the one j was driving!

How is everyone

Can I join please? My ds2 is 10+ weeks old now and is feed by a nasal gastric tube. This will be a long term thing for him as he can only swallow very small amounts of milk. He has very poor suck/coordination due to brain damage. He is feed a combination of expressed milk and infatrini to help with growth. Hope you are all well x

Fed not feed!

Welcome Louisajane27
Sorry about your son's rocky start and hope you are coping and are looking after yourself. (some hope!)

Loads of good people on here including a couple of old fogies (oldsneeze ) So just ask away or just grumble.

How are the rest of you? Life here trundles on but no great disasters I am knackered Madam is not sleeping so her feed tube keeps kinking. Jay is fully recovered from surgery and is signing again so we know he is happy.

DGD was it you that caused all the traffic jams??

Love to all X

Hi and thank you, glad to hear jay is doing well and hoping you all get some more sleep soon. We are doing ok thank you, just getting our head around things. He has quite a few problems, bless him. There not really sure why but think it might of been an infection during pregnancy or a rare genetic disease.

Not getting much sleep at the moment either as he has just had his jabs and I'm sure the rotavirus drops have caused havoc with his reflux! Hoping things will calm down soon. X

Yay newbie. Welcome to the club. Sounds like your getting the help ds needs

Granny it was horrible. Ended in tears :( so have decided dh cant come with me when I drive.

we are just waiting for his appointments to come through. Ds2 has been ill with high temp and hes inconsolable. Was suspected scarlet fever as hes been in contact but still no rash so right now dr said its virus so increased dose of paracetamol and ibuprofen x
hows al and el? And giddy?

Love monsters. You will get used to the car, don't worry. Drive on your own as nothing worse than someone looking over your shoulder.

Loved our Bollywood party with lots of home cooked Indian food ! Love my food

Yay! Good old Jay. Annabel will get there with the sleeping (we keep saying the same with el!). Don't believe it though. Took him swimming Friday and he slept all night

Louisa. Welcome to the thread. It must be an awful time at the moment with all the uncertainty. Lovemon knows all about reflux meds. Hope you are getting physio and all services in place? It's a horrible time, but DS may develop some swallowing in time as it's still early days so don't give up hope.

Al rampaged through our house Saturday and el gave jess and me his cold. Sniffing and sneezing again but at least we've had a few cold free weeks . El was looking a bit skinny as shot up again to 111cm so jess gave him a Mars bar down his tube!

Thank you ladies ilovemonsterinc I hope ds2 is feeling better and that you are all getting some rest. Sneezecakesmum I hope you are all feeling better too and getting over your colds.

All the support seems to be slowly falling into place and we are getting our heads around things. Ds2 is still upset after his jabs/rotavirus drops and is not sleeping well at all! This is having a knock on effect with his feeding. I'm finding that because he is upset the feed is taking forever to go down his tube and I can't think of anything to try and he'll him!

Is he bolus fed? That used to happen with ds so we used to sit in front of the tv while guess with jess was on. Much prefer the pump though now as he isnt as sick as what he was with bolus. Only thing is its veeeeeeeeeerrrrryyyyyy time consuming having to prepare everything and having his feeds on etc.

How is everyone?

Hi yes he is blous fed, thank you for the advice. We have been trying to feed him when he naps or when he is happily sat on one of us but it dosen't always work. He seems a little happier today so hopefully he is getting over his jabs and back to his old self.

How are you? How's everyone else?

Just a quick thought Louisa, could you not pump feed your LO's bolus feed while he is sitting on your knee. Wouldn't recommend leaving him whilst being fed with a naso-gastric tube.

Hi, he is never left when fed I am always with him until the feed is complete. We don't have a pump yet so are using the 'gravity method' to feed him and we flush/push all his meds down the syringe. We haven't been offered a pump yet, I don't know why as his feeding problems are long term. Maybe it's because he's only on 120ml every 4 hours?

Is he still being sick? If he is even with that volume I would probably try and get a pump and try him over half hour for each feed?

Salt have been. She thinks ds is high functioning autistic and adhd. He never sits still.

How is everyone?

Louisa. Would thickening the feed with carobel help with the refluxing? Supposed to help with el but it didn't much. Very little vomiting with BD except when poorly, but can still up chuck spectacularly when he feels like it. (His protest puke!)

Lovemonster. I wonder if the ASD is related to the meningitis? Not a clue about it though. How strange that all this time with the gastric problems no one thought about that! There are diets and things that might help, but I'm not very good in that area.

Saw paed today and she is pretty sure the jumping el does when he drops off to sleep is not epilepsy. Neuro didn't think so either and we don't really. Everyone says get him to sleep properly and it won't happen.....been trying that for years! I guess there is no easy answer and jess has some chloryl hydrate for emergencies when he is inconsolable.

Hi ladies, thank you for the advice. I'll ask the community nurses about a pump as his feeds/being sick is unpredictable. We are currently using gaviscon to thicken the feeds and ranitidine to help with the acid. Thank you again for all the advice.

Sneezecakesmum, that's good news about El not having epilepsy but at the same time must be frustrating. Ds2 has large spasms/movements where he can't control his arms he accidentally hits himself and upsets himself but nobody knows why he does this!

Ilovemonsterinc, how are you? How's ds?

Thats the only way ive been able to explain it to dh sneeze (meningitis) Back where he comes from there's no such thing as asd/adhd etc as they are too poor to look into anything 'unusual' and the drs there treat animals better than humans! So it was hard trying to explain but he didn't say he didn't agree as I think he knows theres something different with ds.
The paed hes seeing is the same one who he saw when he had meningitis. Salt was very worried about the things hes started doing now.
Its good they've given jess that for emergencies. Nothing worse than them working themselves up and with everything el has been through its probably the nicest thing to do when hes like that.

Louisa do you have a dietitian? Would probably be better asking her as they sort feeds out. He might benefit from omperezole too. Ds couldn't tolerate rani and its the omep thats making it more bearable for him. I have a pic to attach later if I remember he had blood inhis aaspiration.

How many dc do you have just being nosey

grannnnnyyyyy where are you?

GRANNY IS HERE bogged down with half term!!

Re meningitis Jay has gastric problems hence jej fed but his problems are not genetic so why is his stomach so high up, small and nearly upside down, this cannot be due to the bloody meningitis. If this had not happened would he not be able to go out on the p--s with his friends on a Friday night as he would puke...what a wuss bless him!!

DGGD come on people give millions to animal charities over here so are we any better.

Oldsneeze so glad epilepsy has been hopefully ruled out We have Chloral for Jay for pain back up but luckily rarely need it, thank goodness as it makes him fart for Europe (being political)

Louisa in my professional (humble) opinion I think a pump could solve your LO's problems, 120mls over 30/45 mins should be tolerated.

Love to all and your scallywags

Hi everyone, thank you for all the advice. Yes he does have a dietician so I will chat to them about feeding issues, he also has SALT which have been helping with his feeding issues so I might talk to them too!

I have two dc, ds1 is 23 months old and ds2 is almost 12 weeks old. Ask away I don't mind

Hope everyone is ok and enjoying the weekend?

I can see thr charactistics more and more now in ds. All the bbabbling of gibberish that he does, how hes never still. He doesnt hold eye contact fir long. Doesn't sleep well and his gastric trouble. Also all the repetitive running from 1 side to thr other. Salt said take pics and video's and ive got loads now :( he is also doing the pica thing eating inedible things despite his aversions
Hes started to do weird things with his hands too like rolling randomly. I bought him bullseye from toy story the other day to try and help him 'battle' his fears. He did say if bullseye went to the beach he wants to go which is a plus.

Louisa our salt is amazing she really is. She is willing towork tthrough the night to make sure ds has his referral done to the development paeds (I rang on Thursday and they hadnt received it)
Salt helped ds a lot with feeding. Mainly giving different ideas to help him and she gave us a book to help us teach ds with his delayed speech.

Granny its not recognised there yet. Nor is mental illness. They treat almost everything with an injection. You can almost everything over counter (antibiotics etc) the only thing dh had problems buying was sleeping pills as they could kill you (gran was in hospital and not sleeping so they told dh to go and get them they dont have a pharmacy in most hospitals there) he had to get a 'letter' from the dr.

Hi all, Im going to bore you with facts and then beg for help.
Our son matthew is 18 months, was on off ng fed since 12 days old (he has a genetic condition causing failure to thrive and severe reflux). Most of his life we managed without the tube with little gain. In April this year we got a PEG (told it would be our savour) to allow overnight feeding and free up the day to try and get more food in him, he has oral aversion and eats very small amounts puree.
The PEG op was where it went wrong, he got a very nasty stomach bug in hospital and ended up with secondary dairy intolerance, he ended up having nothing orally for 2 weeks and we were in two different hospitals during that time as he got a severe chest infection too. His reflux went mental and it was decided it wasn't safe to overnight feed.
We went dairy free and we are just starting to dabble in non dairy free food as per dietician instruction.
This is our feeding plan
On waking - Porridge and offer a bottle
3 hours later - 1/2 yog and 125ml pumped
3 hours later - 1/2 pouch and 125ml pumped
3 hours later - 1/2 yog and offer a bottle
3 hours later - 1/2 pouch and 125ml pumped
3 hours later - 125ml pumped.

Hes barely touching the food, today I finally got him to eat 1/2 pouch and pumped him for him to throw up three times.
Im going crazy, they are happy for us to try overnight feeding but im too scared to.
I wish I never had the peg, we used the above plan on ng and he was thriving on the food.Its like everything that happened in hospital has stopped him wanting food.
Im desperate for him to get this tube out, its not relieved stress its caused more.

My questions:

1. Can you honestly get a child off a feeding tube. (like I say we had before but now its peg would they ever take it out)
2. How to you overnight feed and then what happens in the day time?, were there reflux issues as they want us to do 500ml overnight. 3)How can I get him to eat more food without sickness, is the above plan faulty?, I know its a lot food and milk together but the dietician who gave us this plan stated he needs time inbetween to get hungry.

In 3 weeks we have gained 0.02kg. Im beginning to wonder what the point was.

Thanks for reading if you have gotten this far.

Sarah