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

Rosie I sent the group request thing but I don't think they've accepted.
I dont really use fb that much. Got No pics up as it's the account dh uses and what not.

Hi again,

Yip I am on the FB group too :)

isitme1 Do you think your lo has a milk allergy? DS is and is also lactose and soys too. He can't cope with even traces of dairy. His gut shuts down for at least a week!

The allergies can pose a challenge but it is definitely do-able. DS had about 1800kcal per day on BD. Never got past 1100-1200kcal on Neocate and much of that he vomited back up anyway!!

Good luck with the BD it is amazing the difference it makes. Even DS's medical team who were shocked to begin with are blown away with the difference it has made for him.

Biggest challenge for us in doing BD is going on holiday. However I have worked out some easy to do, non blending recipes for lunch and dinner ( DS doesn't tolerate breakfast) using baby jars, protein powder and EVOO.

I really need to watch the fat content for DS as he only a fairly little amount.

DS is likely to be tube fed for his entire life so having real food for him is so important. In fact we are off to Disney next year and because they are so good with allergies etc and do puree food if you need it, he will be able to choose his meals from the menu for the 1st time in his life :) :) I may need t thin it down a little but that's easy done.

Ok, I'm on Pg4 now :)

Tooloud. What about using those ceramic ball things for washing the bedclothes??? Seems they are very enviro friendly and not scented at all.

isitme If you Ds is having trouble emptying his stomach ( My DS digests NOTHING, not ever water, without Domperidone) then try and really limit his fat intake. If you google gastroparesis diet you'll get lots of info on foods whicha re easily digestable which helps a lot.

I hope his surgery works. When is he having it?

P.S. You strategy re food sounds like a good one :)

When they did first endoscopy it showed nothing
So he was put on fortini high energy to help him put weight on.
That made him very bloated. After second scope it showed he'd had an allergic gut.
He's always constipated unless he's on neocate.
We went dairy free and he completely stopped eating ( which they didn't want- they are trying to encourage him to eat)
So he was still refluxing, still sick, still crying and not sleeping.
The only change there was to him was his constipation stopped.
He's always now very loose.
They still deciding whether or not he is.
Very confusing.
I've tried him with some chocolate pudding down tube but I'm
Wondering if I should wait until the 21st?
Hmm no it's too far and he's losing weight
X

isitme, ellas kitchen do breakfast pouches that are reasonably high cal and at least one is dairy free, that was one of the first things i tried pre-blender x

I managed to get a Heinz baby jar.
I think for the full jar it's 70 Cals or so.
He's had round about 1/4 of the jar x

I think it is so hard when our children refuse to eat - feeding them seems such a basic thing, and it makes us feel bad if we can't do it. SALT didn't really help with ds when they were called in - his history was that he was failing to thrive (has complex medical needs) and had tube top ups- but gradually he stopped taking anything orally and became really distressed if I as much as walked in the room with a bottle. The one useful thing SALT did was to give me a locally produced leaflet which outlined that tube fed babies/children could develop a sensory food aversion and that it was nothing the parents had done.

I know it is hard, but if he is getting his needs from his tube, then try to be relaxed about the oral stuff. I would go as far as saying don't even try. Sit him at the table with you when you eat, and have stuff available for him to try if he wants but don't try to encourage him or tempt him, let him make the first move.

Itisme why don't you ring his dietician ours is very proactive and doesn't care a toss about protocol.
I have been thinking (ticktick) has anyone had any experience of pureed food down a jej tube, he survives very nicely on predigested milk (1000-1050 cals/day) fed over 23 hrs-any thoughts

Agree with starfishmummy. Personally I would stop even encouraging him . Children soon learn that feeding can be very manipulative IYSWIM. Tube feed him until he is ready and meanwhile enjoy him.X

The dietician is on holiday.
I might just do that.
He won't let go of his dummy
I wasn't told about the sensory thing.
That's what google is good for lol
X

2old, i know that people do do it but i think you'd have to be very careful with straining the puree. i think people often start on blended food because their child is not thriving on formula. thats what happened with us and then once i'd started it just felt like totally the right thing and the benefits to my dd were un-ignorable(is that a word??). there is alot of information/support avaliable and a book called 'complete tubefeeding' is excellent too :)

Sorry 2old I don't have a clue
X
How's everyone's day been?
X

2old...sneaky
Rosie thanks...re the using fluids to increase the volume of the stomach. DGSs is the size of a walnut.

Isitme.......not going to offer any advise as you DS sounds incredibly complicated, you have my sympathy only as it sounds a nightmare. Baby food jars are rubbish if you are trying to chunk up a child, no calories to speak of. Designed to avert an obese population!

I can understand little isitmes problem with food. I think he associates eating with pain from the refluxing. DGS associates food with vomiting and will often retch at the sight of it and even at the syringe. Ok though after that first sight and will then eat ok. Once the reflux ends I bet he would be much better. Don blame him tbh must be awful to have reflux.

Blended feeds sound brilliant. We would go down this road if we were feeding via tube only. It's common sense and no wonder little gallivants health improved with fresh cooked food with all the trace nutrients.

DGS used to be a bit constipated but at least it smelled of poo, feed poo smells awful in comparison!

Thanks for replies re jej feeding, am rather nervous of changing things at present as he has a horrendous year--screaming for hours "they" finally came to the conclusion it was neuropathic pain now having Amitriptyline and Propanolol to control pain. Happy for 6-8 weeks now miserable non smiling feel we are back to square one and increase of seizure activity.
DD had a brilliant day at school so not all bad news.
Galli welcome looking forward to your input.
Sorry to moan for listening

Sneezecakesmama can't quite work out your relationship with sneezecake (old age) XX

Yep sneezcakes salt have said Its food aversion in response to a stimuli- the reflux and pain.
He's had a few bites tonight.
Didn't put him in the high chair for tea.
Mum made him a plate up tonight. He's literally had the size of my thumb nail in small chicken bits.
He's crying even more when urinating now.
He woke up screaming and was holding his nappy.
I've got uti and so has he lol.
X

Evening, we are in hosp ds has yet another chest infection they think he is aspirating the feed from his g tube. It is not like we can run it any slower so who knows where we go from here. We already run continous feeds.

Sorry to hear your ds is still unwell isitme, I hope the antib pick him up soon. 2old I hope your ds gets help for his pain too. Good to hear dd had a good day. Hi to everyone else.

Wishing everyone more sleep than we will get! Its so noisy here, on the bright side his sheets will be no issue here, in hosp he is normally found sleeping on me.

Awww tooloud.
Hope ds gets better soon
think you will need it for the long night ahead!
The Internet was the only thing that kept me sane when ds was in hosp lol.
Could you try a thicker feed that's fed slowly or maybe they might suggest jtube? As that sounds like aspiration can't happen? Correct me if I'm wrong 2old. I don't really know too much on that subject.I'm sure 2old will be along soon to help :)
X

Isitme and Tooloud- Get well yesterday wishes to everyone!!!

For those thinking that BD would be great if their child was completely tube fed.......what some people do whose children do eat some things, ( I don't as DS is so orally aversive nothing goes in his mouth), is they let their DC eat what they want and the rest of the meal is blitzed and tubed........less waste, more calories :)

Tooloud ; Has your DC had a fundo? That could be the next step possibly or JEJ? Hope you're not in hospital for long............our longest was 13 weeks in one go. I only stopped keeping a hospital bag packed a couple of months ago as DS was constantly in. Hope the ward is a friendly one and you have earplugs to help you sleep. ( I use 1 earplug in hospital which lets me sleep but still hear DS). I use 2 at home cos DH snores like crazy......lol

My day's been ok. Just been writing to the head of education telling them their policy of employing 1:1s on temp contracts is rubbish! My son's 1:1 since starting school 2 years ago isn't having her contract renewed simply because of ££. No thought for DS ( who is very medically complex and vulnerable) or the increased risk since the others don't understand his medical stuff as well as she does!!!! So that's a bit frustrating. Won't change their decision but at least I've told them how it will affect him!

On a happy note: DS got his new shiny trike yesterday :) :), funded by The Masons!! he is so happy and proud of himself that he can make it go. He just doesn't have the strength or balance for an ordinary bike .............so THANK YOU to all the nice men who contirbuted and made him one happy boy.

Sleep well everyone. xx

Morning all.
Hope everyone slept better than I did! ( not ds fault, I was worried..)

Galli that's brilliant that your lo got a trike!
That's one thing I want but haven't bought as there's no room here ( I'm not at my own house yet so i have to 'limit' myself lol.

Tooloud how's ds today?
X

Morning, not much sleep here up since about 5 which is abit obscene. We have our own room but it was still really noisy. He is not too ill, I am hoping after 24 hours of iv antibiotics they will let us home with normal ones. Everyone is very cautious with him as he falls ill so quickly and badly.

Galli that is good re trike, I have heard of masons and rotary club doing a lot of fundraising for sn children, let's hope for the rain to stop so he can use it!

I think ds consultants are going to be talking about what to do next I think they are thinking fundoplication but we will see.

Hugs, Tooloud.

Morning all.....yes we definitely need the rain to stop. DS asked yesterday if the summer holidays were cancelled because it is just raining all the time ...( has ASD and ADHD traits ina ddition to all the other stuff going on)!

Tooloud, hoping you get home tomorrow then and DS perks up really quickly.....remember the earplugs trick, it really does work. Having spent probably approx 3.5 years in hospital in total I wouldn't go in without them :)

Also a bit funny.....This week is health week in school;, so they are doing lots of different taster sessions for different sports etc. He told,' the hospital came to school today' When I enquired further he told me, ' He was talking about dead people. It was a little bit yuk!'. I wasn't best pleased they were talking about death ( as he can get really anxious if he catches on to something) so I kept trying to get a bit more info. After about 20mins of me quizzing him it seems they has someone in doing a CPR demonstration!!! DS did not participate as it was 'yuk'. The only thing he puts in/near his mouth is his toothbrush so no way was he going to blow into th dummy!!!! Made me smile :)

I suppose I should tell you a little about DS : When he was born the prognosis wasn't good. He should have died inutero, but he didn't, he shouldn't have survived a mionth, but he did and is now 7 yrs old. I was told he'd never walk, talk or have any quality of life!! Well he is a happy little chappie, who can talk ( has speech issues though) does walk (uses a wheelchair for distance) and is the happiest , sunniest wee boy I know :) His internal organs are not in the right places ( not a straight left-right swap - more like organ soup!), he had 3 heart defects,He has major arteries missing, extra arteries in his kidneys, some organs are a funny shape, his liver is now in his lower abdomen in front of his bladder, his stoimach is tilted so his food has to go uphill before it can get to his gut, his liver was inside his umbilical cord (exomphalos), cleft palate, and tiny jaw ( pierre robin syndrome), very complex severe talipes (clubfeet). His sats were between 60-80% for the 1st 4 weeks of his life so not sure how much damage has been done. He has multiple allergies food and non -food, gets lots of pain in his feet/joints due to Hypermobility Syndrome and hypotonia and scarring from multiple surgeries..........He spent 13 weeks in hospital before coming home. Was fed into his duodenum for most of his life , continuously 20 hours per day. Spent most of his life in-out of hospital having surgeries, being VERY ill and no-one able to say what the problem was. Cognitibely he does very well. However the older he gets the gap between him and his peerrs gets bigger. He is very innocent and like I mentioned before has very strong ASD and ADHD traits ( have chosen not to assess at this time as we are in scotland so support is given on need not diagnosis and I don't want to medicate him). He has lots of sensory issues and diagnosed with sensory perception disorder. His little body is completely wonky. Even his biochemistry responds oppositely to what it should when he is ill!!

We have no umbrella diagnosis. He probably has an element of CP( due to low oxygen levels when he was born), but neurologist didn't want to put it on paper as he believed people's expectations of him would drop! He has had every genetic test going and still they have found nothing ( Currently part of the DDD study in Cambridge). Geneticists have discussed him at global genetics meeting and told me he is the only person they know of in the world with his combination of issues disabilities!!

But he is happy, loving and kind.......what else would a mummy want :) He is my reason for living and I don't regret a single moment. I would take away his pain but I wouldn't change him. Because of what he has endured he is the person he is today and I love him just the way he is :)

Have a good day everyone and sorry for the epic so early in the morning :)