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

Hope they do something to help him soon.
Try and cat nap during the day when ds is asleep.
X
{hugs}
Have a
X

Awww galli {hugs} to you and your ds.
Bless him.
That's all we mothers ask for is a happy and healthy. We can't seem to get the healthy bit right but I'm 100% sure he's as happy as can be!
How is he coping with his health?
Is he your only child?
just being nosey x

Galli you really shouldn't write such moving stuff early in the morning when I have ad such little sleep, I blame you fully for making my eyes leak a little! Seriously through he sounds a lovely lad who has been through a lot, I do hope that the sun returns for his summer holiday.

I have tried earplugs before (they even offer them on the ward) but they make me sleep lighter somehow, we too are seasoned hospital visitors. After a few nights I can tune most other stuff out and only wake for ds and his alarms etc.

I am showered, breakfasted, room tidied, beds made, ds is back asleep and I have been able to put him down ( he must be unwell) and I am bored. Internet is painfully slow on phone, now I am whining I know. Perhaps they will let me do some cleaning if I ask!!!

Why don't you rest a bit.
Lol@ the cleaning!
I used to help the cleaner when she came round i would help lol.
We just get bored.

Hope you find something 'entertaining' to do if you don't/ can't sleep.
X

Can anyone give a simple bd recipe please?
I've heard a lot about oils and grains etc but don't have a clue.
Also can I just start with stuff like baby rice? And the powder food meal things?
Just really scared of tube blocking x
Thanks x

Sorry for the wet eyes, wasn't intentional, suppose I'm hardened to it now ...lol

Tooloud....well done you for being able to tune out the noise. I have never mastered that one. Do you read? I usually take loads of books to the hospital. The more ill DS is the more I get to read. What about a good dvd on a little dvd player? What hospital are you in, are they parent friendly?

Isitme; Re BD recipes. If you pm me your email I will send you our recipes. They have been checked by dietician weho says we cover all micronutrients. SO if volume/cals too much then I would reduce the amounts accordingly for your LO. DS is dairy and soya free though.

We have a vitamix now, but in the beginning I used a hand blender, never seived and didn't have any blockages.I just didn't use nuts or seeds then. Does you LO have a PEG or a button? With buttons if you do get a block it's easier to take it out unblock it, dunk it in boiling water, allow to coola bit and put it back in :) The only block we have ever had which we couldn't fix was caused by Losec!!

Hope toolouds DS is allowed home and is better soon, hospital is the pits for sleeping - time seems suspended and it's extra bright and loud, very odd. Also little isitme and 2olds DS, it's horrible when kids are ill, as if there's not enough to worry about!

Sneezecake is my grown up (ish) DD and DGS is my grandson. DD chose the silly names! She post sometimes causing major confusion.!

Gall...brilliant re the trike....we were also road testing various trikes under the OT guidance and went for the small momo. (£1800). (I personally liked the quest kitten but the rep showed us the next size up??? Which totally swamped him - age range 4-7 - dgs 3.8???). Anyway looking into funding it would be 2-8 months by the time all the paperwork done. Miracle - found on ebay a never used kitten trike with all the supports, made an offer and got it then and there for £300 (they asked for £250 but I was so overjoyed I gave them an extra £50!) It is in perfect condition and still shiny too. So know how you are feeling - though I hope you don't need to do funny handshakes now! Local charities and charities make me quite teary! He will also be getting a whizzybug in 10-12 weeks.

Will look into BD if DGS starts refusing oral foods.

What about stuff like baby rice?
I was just going to start simple.
I remember I used to give ds the cheese and broccoli baby rice meals by heinz. Is that stuff ok?
We have a peg not button.

Wow 1800 that a lot of ££££.
So there's sneezecakes and sneezecakes mama.
I will remember that

X

Gallivant your DS sounds amazing, a bit frightening too! It never fails to amaze me what parents of SN children cope with, and mostly in a matter of fact way. My DD is my hero!

Little DGS has a DVD player and it was wall to wall Charlie bear, baby jake, Justin.....so yes to DVD player. iPad is brill too, but not sure about roving Internet?

Wish I knew more about gastrostomies. It's just working for DGS at the moment quite straightforwardly we only need to work on increasing the size of his stomach so he vomits less. I think you can get flaxseed oil as opposed to capsules and it's a bit of a wonder supplement!

Phew what a lot of posts.Tooloud hope things are better this morning and you are home soon. Not meaning to do one upmanship we spent 15 months in one shot in Addenbrookes (thought it would be 10days) ?fortunately he had a severe latex allergy so he had a side room. It was awful I cringe every time I see it on TV
Re jej feeding DS 's quality of life has definitely improved, no more reflux. Other son with jej but had no stomach
Galli how exciting about DS's bike I hope he enjoys it. We have just heard that Ds is getting a Pea Pod chair it looks brilliant.
Sneezecake (which ever one you are) thanks for sorting out your family tree I ?think I understand.
Itisme what size tube have you got (not you!!) Looking at DD's PEG blended food may block tube (she has a 6) DS has a 12 with a 6 threaded through it.
Hope you all have a good day. DD27 has just left for Sandringham for HM's garden party so hope it doesn't rain.

His is a size 12. Still seems tiny lol.
Gave him some more chocolate pudding baby jar and he gagged and was going to be sick. He kept refluxing for ages after but it stayed down.

Hope it doesn't rain. It doesn't look too bad down here ( looked better this morning though!)
X

HI again,

Baby rice is fine ( and other baby cereals, but watch out for dairy f it neds avoiding). The one thing about rice though is it can constipate...

Isitme, if i'm reading right then it's a peg your DS has. You do need to be a little less gung ho than with a button as blocking a peg is a bigger problem if you can't unblock it, but it is certainly do-able. You may want to seive your blends if blending from scratch.

I have emailed you our recipes :) I'm afraid they are a bit more scientific than most simply due to DS's allergies and intolerance to fats. I would love to just whizz up what we have :)

Great that you got the Kitten for such a fab price Sneeze, great bargain hunting :)

2old - 15months in hospital..... you deserve an award!!!!

Just as a point of interest how many of your LO's get a continuing health care plan.We have but not sure how it works BTW we have no SW

We have no SW and don't know what a continuing health care plan is??? Sorry.

2old can you explain a little more please?
Ds health care plan is: ( very brief and from gastric side)
Get peg- done
Get ds more comfortable with foods- can't see happening
Rule out intolerance- not done too well
Get gastric emptying scan done- don't know when
Operations- if still do-able.

Speech therapist as he's not talking.
He's got hearing test on 25th.
There's strong family history on his dads side if family of deafness. Plus meningitis and delayed speech- hcp want to check again.

Is that what you mean?

Thank you very much.
If I have more q's I will pester you galli
x

Ooh yeah nope no sw.
X

All pestering acceptable :)

How olds are all your LO's?

My DS is 7yrs old and tube fed since birth (NG/ND for 5 years, button since 2010)

Isitme : Re the gastric emptying scan don't be too hopeful of a great result. My DS doesn't move anything out of his stomach without Domperidone..... We have fed him and 4 hours later get the same amount back !! They did the scan and it was 3 hours for the Barium from stomach to bottom!!! I think Barium irritated his gut enough to get it working.

No how can I put it 'cos I'm not clear They get basically what your LO gets, they get all extra care from school (physio, SALT, teacher of deaf and DS teacher of blind and SENSE. He also gets 1-1 trained in deafblind all this is funded by the LEA also DS gets support from school nursing team
I hope that Ive got it right personally I think they have a good deal.
Now here comes the difficult bit
From what I can gather because of my 2 LO's complex health needs The NHS provides extra funding
1),it took only 3 weeks to get a portable hoist
2) It has been decided 1 week ago Jay needs a comfy chair it will be arriving next week
3) And they get very regular good respite care package

continuing (bloody computer)
4)Nurse comes x1 week to put them to bed
I can't understand why
it's not because I'm old is it panic

The worst time of undigested food that we've had was between 10-12 hours after a meal that he'd had.
It was absolutely shocking to see. But after he was sick he fell asleep without any pain.
He's on 3.6mlsx 3 of domperidone.
He was at a stand still for 8 months with his weight.
Couldn't get him past 20lb and he was 8.7lb at birth!
He put on a kg in about 19 days and then dietician thought he was putting it on too quick so she said drop a fees. He couldn't tolerate that amount anyway x

*feed not fees.

Hmm so I can just give 10mls of oil as a 'snack' and that's like 90 cals?
X

Oooo
I think I get you.
Ds Has salt, dietician and I think that's it.
Ive applied for dla for him.
Hv trying to get him in nursery for meals and snack times I think.
She was worried about his bad behaviour but he was very 'fustrated' by everything he has been through and he was venting.

He's 2 in September and im still in the process of getting relevant parties involved to help with his care.

X

Gallivants - "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 .... I was told he'd never walk, talk or have any quality of life!! Well he is a happy little chappie, who can talk.... does walk (uses a wheelchair for distance) and is the happiest , sunniest wee boy I know

I have one of these too!! Mines 13!!

oh where did my italics go

sneezecakemama-giving water half an hr before a feed helps to increase volume tolerance. we've worked up to 120mls water before a 200mls feed. as the water is absorbed rather than digested its all gone by the time the feed comes and preps the digestive system for food.
Tube sizes, my dd had a 12fr put in at 18mths old- a 6fr sounds tiny, i wouldn't fancy putting food down it.
isitme, a few thoughts- i would replace formula volume rather than putting it on top as sounds like your ds already has enough volume atm. it depends how sensitive your lo is to fats and if he already has dge i'd go slow with them until you see how he reacts. i remember making a (non-blendered) blend of oat milk, plum baby four grain cereal, smooth peanut butter, coconut oil and fruit puree that went down the tube no problem. you do need decent syringes though, you probably get medicina? they aren't so good for plunging food. we get baxa now which really do the job. i know i mentioned the blended diet uk facebook group but there's also an open group you can just post questions on called blenderized food for tubies on facebook with lots people with lots of experience who are always there to help and support.
2old pea pod chairs look soo comfy, my dd extends alot so wouldn't suit her but otherwise i'd definitely go for one.
it's been a beautiful day here and i've had my dd's in the park and going on the swings etc with dd1 on my knee- lovely day!:o