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

Lol starfish that mn for ya.

I think I want a pat on the back
I put some pear, olive oil and milk in the blender ( it made juice lol) and I've give him 40mls plus 50mls flush
X

Thanks Rosie.
He's not been any different with the pear I gave him ( yet!)
So we'll see what happens.
X

hi. dd has had a tube (mini button) for 4 years. I clean the site with warm water with teatree and lavender oil and we have never had an infection or granulation. Its important the button fits well and doesnt move and rub.
dd eats abit by mouth (very severe cerebral palsy), has ketocal tube feed and before she went ketogenic was on the blenderised diet so she got real food as the sugar filled tube feeds made her vomit.

The uk group have accepted me :)
I've already got the other group saved lol

He's had a few bites of pizza base but not swallowing-
Any ideas?
He just spits all food out :|
X

Hiii kal.
I remember you ( it's fazsaeed)
Hows your lo doing?
How are you? X

Hi Isitme. Sadly she is going downhill with chest infections and her spasticity is worse. It isnt good prognosis.
Least her tube is fine!

Awww. Poor little princess!
How are you??
X

Exhausted. Her sleep in much much worse with hourly wakings despite lots of sleepy meds. And tired of constant battling for equipment and respite. Feel all gloomy right now

Isitme : Definitely DON'T give 10ml of oil straight. You need to mix it with a wee pouch or jar of food for emergencies. I would think giving it straight would resuly in a vomit!! If he has delayed gastric emptying you may need to messa round with the amount of fats he has until you get to what I call saturation point. Any more than 11g of fat and any one time and DS pukes it all!!

2old....great you are getting all that support without fighting for it :) Just enjoy :)

Starfishmummy......yay!!!

Regards Flushing - that's bit controversial. Supposed to flush loads. In reality I don't flush with water every time. I tend to use the flush to pour into the food container, swish it around to make sur ewe get all the calories.....never had a problem and buttons last at least 6 months :)

We give Domperidone, 8ml x 4 per day. For bolus feeds he gets it exactly an hour before his meal with 150ml water ( remember he is 7yrs old and about 23kg). We do get up and give him domperidone in the middle of the night at 3am though otherwise he pukes his night feed. This works really well for DS. The gastro told me the effects of the domp are good for 6 hours. So he has meds at 9pm when we put the pump on and then 6 hours later...........

Kal - Hugs xx

Rosie...thanks for that. I was wondering how we go about increasing the volume of food accepted without vomiting. I know the stomach stretches so will start with 10mls as you say and then build it up. He doesn't have trouble digesting etc thank heavens, sounds horrendous to have all the other stuff going on. The oat milk peanut butter etc sounds loaded with calories, which is what we want but we are still finding our feet with it all.

Isitme. There is a mn thread about talk tools and ways to encourage the movements for speech, which your DS is missing out on if he won't chew. If possible get him using straws, even to play with, and using whistles etc. to encourage mouth movements.

Thanks galli. He had 20 mls left of the pear concoction lol. He's done fine! Yay.
Thanks for all the info galli I really do appreciate it.

Kal have a it's not nice when lo's are ill. You also have to look after yourself though. Make sure you eat well and are as rested as possible. [hugs to you and fam]

2old the chair sounds fab!!!

Rosie he likes well actually used to like using straws. He would imitate a whistle noise.
He is just chewing and spitting everything!! If he let's anything go near his mouth that is.
He won't even brush or let me brush his teeth.
I totally forgot ringing salt today. I will ring now and leave a message for her.
One step forward Two steps backwards!!
X

Sorry can offer no advice on blended food.
KalSkirata long time no see sorry to hear your DD is so poorly it is so awful not being to help your child. DS has had a rotten year smiles are rare. Send my love to the rest of your gang X I think your package of care is disgraceful where are your DD's rights
Starfishmummy sometimes the medics sadly are right with their predictions but I am so pleased for you and others although I am envious I wouldn't not have him.

No problem 2old galli is a great teacher lol

ellas kitchen pears pouch has 29cals in it!!!
Omg how do these children grew with that???
I'm defo getting some of the Heinz broccoli and cauliflower cheese baby rice I think it was 130cals in a portion
X

Hugs to all who need them......xxxx

Isitme....we did a therapeutic toothbrushing programme with DS as he wouldn't even tolerate having his face cleaned. He will now brish his teeth ( front of them only, but it's something). The programme did work. Ask you SALT about it. If no help I will try and write it up for you. :)

I've rang salt and left a message ( it was 6.30)
She said to get his fav teddy/ toy involved and try that way.
But nope not working. I will see what they say I don't want to keep you from your lo If all else fails I will beg lol
Thank you very much for your help
X

I was doing research and-
Peaches and bananas
Banana baby brekkie
Mango brekkie
Raisin and prune baby brekkie
Bananas apricot n baby rice
Apple n banana brekkie
All ellas kitchen
All have between 120-135 cals
Hope that helps someone
Oo and the Heinz baby broccoli and cauliflower cheese (in the box) had 130+ per serving too.
X

They all sound great :) Pity DS can't have dairy it is very restricitng!

Def metion specifically therapeutic toothbrushing, she/he should have heard of it. Not a prob to write it up if you need it. DS is in bad asleep by 8:30 every evening so plenty time :)

Have a good night everyone. xx

Good morning all.
Hope everyone slept ok.
Tooloud hope you got some sleep!

Thanks galli. If you have a few spare minutes then yes please I would love to get ds to let me (atleast) brush his teeth.

I felt inspired last night
So I simmered some apples, put a teaspoon of olive oil in and some full fat milk and then stuck it all in the blender.
I then sieved it and popped it in the fridge.

This morning i thought right I will mix some yoghurt with it. And he's had nearly a full yoghurt with 2 apples and full fat milk and olive oil!
He's gagged once. So I put the bin near him and he took his dummy out to be sick into the bin but I tried to distract him so I put tinkerbell on lol he's a big girl he loves fairies lol

X

Good morning all.
Hope everyone slept ok.
Tooloud hope you got some sleep!

Thanks galli. If you have a few spare minutes then yes please I would love to get ds to let me (atleast) brush his teeth.

I felt inspired last night
So I simmered some apples, put a teaspoon of olive oil in and some full fat milk and then stuck it all in the blender.
I then sieved it and popped it in the fridge.

This morning i thought right I will mix some yoghurt with it. And he's had nearly a full yoghurt with 2 apples and full fat milk and olive oil!
He's gagged once. So I put the bin near him and he took his dummy out to be sick into the bin but I tried to distract him so I put tinkerbell on lol he's a big girl he loves fairies lol

X

Isitme. Did you put this revolting concoction lovely blended food down the peg or into DSs mouth? We are very novice still and quite anxious about blending. Ellas kitchen fruit pouches are what DGS likes and eats happily, typical of him to love calorie poor food!

I put it down the peg.
I've just come back from renogram at the hospital.
Well actually I'm lying lol I went to tesco before coming home. I bought a tommee teepe baby food blender (£20) for a little cute baby one and I bought some fruit and veg and the baby rice stuff ( broccoli and cheese, summer berries etc...), yoghurts and some chicken.
Oo and garlic bread ( he ate some yay)
I put half avocado ( never touched one in my life) and some of the broccoli and cauliflower cheese baby rice with a teaspoon of olive oil in to the blender and the consistency was like proper purée food so I added a few drops of water as I went along to get the required runny consistency. I didn't make it too runny as I did t want it to be too much volume.
He's had 50mls of it and has done brill.
I've decreased his neocate by a 20mls. I know it's not a massive difference I just don't want to overload him.

I feel very inspired I could cook all day lol
Thank you once again galli
X

Isitme: You are doing fab!!! Just a tip though, it doesn't need to be runny like formula. Thicker will go in, you just have to plunge it a bit :) What end does your DS's PEG have? I can send you a few Baxa catherer tip syringes if that helps. Works much better than medicina ones :)

He has the female luer lock one if that makes sense.
I'm looking into buying some syringes. The delivery company keep sending me wrong tips. Dietician won't sort it out either...

I have bladder tip ones if anyone needs them.
I have loads!

Thanks galli.
I do prefer homemade as more cals.
I only bought 2 ellas kitchen pouches 132 cals each.
10mls of olive oil, half avocado and the some of the Heinz broccoli rice. Right- 90+88+100+= 278 cals. The neocate is 1cal per ml and he has 600mls a day.
I will give him this twice a day plus his milk feeds. Slowly I think I will start to drop his feeds
X
X

A question:
Right stuff like grains and oils and seeds how much do you put in?
Whats fructose and agar? Why is it needed.
What type of glucose do you use? The only type I've seen is powder version.
I don't know what else is needed.
If that makes sense?
Thank you x

Isitme. That sounds really fabulous. Much more nutritious than feeds and the brilliant thing is your DS seemed physically comfortable!