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

Hi Folks,

Sorry for my absence lately. Anyone heard from Isitme??

Sneezecakes re your DGS vomiting. Soundsl like my DS was when on formula feeds. He has really bad reflux and dismotility ( delayed gastric emptying). He couldn't manage bolses of any kind. Was fed via NJ tube into his gut for several years and the NG ( couldn't have a PEG due to his wonky anatomy and it taking a huge surgery to place one, which he wasn't fit enough to endure at that time).

Until he was 5.5 years old, whether NG or NJ he was fed predominantly 20 hours per day, simply due to his inability to keep his feed down.

Now he has 3 large bolus feeds a day, dinner is the best tolerated and almost 500ml!! He still has an overnight feed as we can't get enough calories in during the day but this is a huge difference. What hapened to cause this huge change for the better? We started blending up real food to put down his tube........He struggled to tolerate any formula ( and tried many many specialist formulas). He still needs a fairly hefty dose of Domperidone ( 8mg x 4 per day) but the change for him has been life changing.

Dieticians etc can still be quite worried about it and try and discourage it but giving real food via tube has made such a huge difference yto so many children ( whose parents had the courage to go against the dieticians) that the BDA are now proposing to do some research into , what is commonly known as Blended Diet.

There is a facebook page ( Blended Diet in the UK) which is really useful, a blog (youstartwithatube.com)by a wonderful australian man who was himself tubefed and used BD ( who sadly passed away earlier this year).

If this is something your family would consider please do feel free to contact me and encourage your DD or even yourself to join the facebook page. It is a real source of encouragement and information

Good luck xxx

hi everyone im really new to this but really happy to find a support group for this.
i have two children, my DS is 17months old and has NG tube (newly fitted) he has had vomiting and lose stools and falure to thrive from birth, had all tests done and nothing found, on reflux meds which dont help, he goes through 4weekly cycles, changing milk helps but we have now tried all milks! we are hopefully getting a gastrostomy done ASAP if gastric team gives ok on thuresday.
We have found NG a nightmare, he pulls it out constantly and from 6am-10pm he has to be attached to pump (compleatly impracticle) Even on NG hes still vomiting and we have having big weight losses still. hes refusing all solids now (was a good eater in past) stuggeling to keep tube stuck dwon as he is very sweaty baby.
Gastrosomy feels really scary but im told its the best thing
Feeling very overwhelmed by all of this at the moment!!!!!

Hiiii all.
Its been a hell of a month! !
Ds has been ill
Hes lost weight. Stoma site leaking. Iron deficiency dietician is confused as he should be perfect with the neoocate as its complete

I will read through previous posts and then see what input I have.

Missed you lot lots.

X

Right
Welcome newbies
We're all bloody mad here apart from my new granny.
And sneezesmum I do hope everything goes smoothly with dd pg.
Pre eclampsia is terrible.
We are "going with the flow". I want more kids so might have some news in the next few months lol.

Granny im sorry I wasnt here when dd was in hosp.
Gali.
Hi how are you? ??
Hope everyone is good x

Welcome back dear isitme We missed you, but are still helping each other along, and just being there. Never thought you had abandoned us Hope little DS starts to perk up but its that time of year Weird about the iron deficiency with the neocate. Does he also have vitamin D? Your Granny 2old will be so relieved to see you

Anyway, wedding went swimmingly. Everyone happy, even DGS after initial at PEOPLE! Funny story...I was told about a batty old relative with 'foot in mouth syndrome' her name I was told was B...... Anyway some old dear came over to DGS asked what was wrong and I said CP. She said 'will he get better?'......[hconfused] I said 'your not B.... by any chance?'!!!

Very very interesting re the blended diet gallivant. DD is seeing the dietician so will discuss domperidome and maybe ranitidine. What makes us think its reflux is the boluses slosh into his mouth and you can see the milk when its being given!!! Metoclopramide looked good on paper for this problem, but has nasty side effects. Soooo we will look into the blended diet (we have no qualms about going against the professionals!) I am a bit confused about the blender needed as the really expensive one is scary, but will go to the fb page for a look. It just cant go on, the vomiting is beyond a joke now and interfering with the other things we do. DD was feeling a bit offish with early pg symptoms but is now up to tackling the sleeping (yay)

Hello welovepeppa. My daughter fought the PEG for DGS for months but in the end it was the best thing to do. Nearly everyone says this! Weight loss in such little ones is awful, DGS was looking like a famine victim DD took in a portable DVD player with lots of favourite cbeebies and said it was incredibly boring. Make sure they keep your DS topped up with pain relief, but most PEGs are very straightforward. DGS put on loads of weight and got on the charts for the first time in his life.

Isitme welcome back Dearest Grandaughter I have been really worried but glad all is OK apart from your DS. Please me update us. Like you may have to change DD's feed BUT to Neocate!!! Learning rapidly that to not fit colostomy bag equals bad news. DS's bladder is playing up not peeing until bladder fit to burst.
Welcome to all newbies will have more time next week after half term.
Love to Oldsneeze and DGD
PS Oldsneeze we found Domperidone 15mgsx4 ranitidine 10 mls x2 and Omeprazole suspension 10mgsx2 daily helped with reflux.
xx

Hi, I'm a newbie to this group too. My DD, 23 months has had a Mickey button since she was 5mths old. She had a fundiplocation down at the same time. Regarding reflux we found the highest possible dose for her weight of both domperidone and omeprazole worked.

Gallivant I'm looking at starting my DD on a blended diet, once we are out of the dreaded cold and flu months. Our dietician has been supportive of this. She has recommended the following book www.amazon.co.uk/Complete-Tubefeeding-Eric-Aadhaar-OGorman/dp/1470190222/ref=sr_1_1?ie=UTF8&qid=1343060149&sr=8-1
Although I have not read it yet.. But it's on my shopping list. Are you just blending up your family meals?

I may have missed an earlier post about this, so bear with me... Does anyone put liquid echinacea down the tubes? I'm looking for a good source!
Thanks

Tootsandblanket welcome to this very sedate and ladylike thread, especially me
I am sure I have mentioned before but YEARS ago (hence my name and Oldsneeze's) we used to put blended diet down tubes and guess what they did very well.
Sadly daren't use it for DS as fed into jej, and DD has multiple gastro probs
Anyway good luck
XX for DGGS

Isitme: Welcome back. Exciting waiting for news of more pitter-patters of tiny feet. Hope DS feels better soon. My DS was completely malnourished and anaemic on Neocate. He didn't absorb most of it. Blended food was the only thing that sorted his absorption issues. It's not for everyone though.

Sneezecakes : you can get a Villaware blender on Amazon for much cheapness, compared to the Vitamix ( only about £75) and gets really good reports from folks using it for BD. Check that one out. I started off just using a hand blender though so it can be done. :)

Welcome to everyone who is new :) Isitme is right. We are a mad bunch, but then again we need to be.

Hi Toots: Great to hear someone else whoi wants to give their child real food :) Welcome to the gang. I use 'recipes' but only because DS has so many allergies and intolerances it would be impossible for us to eat normally. He is even really sensitive to fat contenct and has a very low threshold for it. The book is fab and definitely worth buying. Great that your dietician is ok about it. Most of us have had a battle with the dietetics department! If I can help at all just shout.

As for us. Well 2 weeks ago, Ds had his flu jab. Several days later he spiked a temp got an ear infection and ended up on Amoxicillin. Spent last evening in the local children's ward as he developed diarrhea which then turned to pooing blood and mucus ( no poo!) Samples have been sent and he's had only dioralyte since lunch yesterday. Today has been better but suspect as soon as I give him food he'll start again. I think he may have C-Diff!!! Anyway giving him banana in about half an hour, so everything crossed!

Hugs to all who need them
xxx

We has the tommee tippee baby food blender and it was amazing. Buuuut we a are trying to sort oral feeding out so I want one thing to concentrate on. .

Had a scare yesterday. Had really bad chest pain so went to a n e.
Everything was fine (ecg bloods n chest xray) but ive had it again walking up hill so im guessing its muscular pain.

Im supposed to have the jab so probably go Friday.

Hope everyone is well.
X
X
Galli hope he tolerates th3 banana x

He didn't. He was on the toilet within 5 min of having it. Back to dioralyte!!

Hope your ok? Xx

Galli what would we do without Diarolyte? actually I can at a push make my own What a clever dick I am

gallivant. Sorry about the diarrhoea, hope it is not c diff - it is evil and your poor DS will end up losing weight. Aargg hate all bugs. DD and DGS are both having the flu jab (tomorrow??) DD also going to have DTPP malarky because of whooping cough. Its a case of what is worse? Then DGS MMR! All spaced out as he had singles at 13 months because we were of the opinion lightening can strike in two places (even though we dont believe in the ASD thing) [hconfused]

Sorry the banana did not go down well. I think if they are pooing blood and mucous its a bigger indicator of bacterial infection rather than viral. Having antibiotics too buggers up the bowel.

DD is getting a bit of enthusiasm for BD but seeing dietician first. She is tackling sleep at the moment. So far so good but its early days. Going to look out for blenders as recommended.

Isitme. I think I know what you mean about the chest pain. I ended up with a CT scan of my lungs because the pain (twas fine) But it is INCREDIBLY painful, and just muscles/connective tissue!

Have just won 4 gastrostomy vests on ebay - O the joy of sniped bids....evil

Weve moved over to our new place almost we sleep here and have breakfast here too. Ds is in his cot bed right next to us and its raised with on side on so he cant fall off the other side..this way hes close to us but not in our space.

Its lovely having a bit of leg room lol..

Gastrostomy vests?? I might check them out. When ds had peg in I cut little slit in his vests close to the site so I could get in and attach his feed. Now hes got the button ive stoppee doing it as I need more help room to attach everything.

Last month I really did think I was pg.
I dreamt of food (last time that happend I was pg with ds) and it was weird food. Palma violets rough fluffy mash. From that point on I took extra care with everything. I even had a late bloody period. Ive got pcos so this time round might be harder.

whats c diff??

Thanks all. Isitme: C-Difficile is a nasty nasty infection you can get after a course of antibiotics. Basically the antibiotics kill off all the bad bacteria but all the good bacteria in the gut too. However most don't kill ther C-diff bug which is usually kept under contol by the good bacteria. Some people have it in their gutr al the time but because of the god bacteria don't have any probs. However an active infection is extremely infectious, especially to others who are on/have recently been on antibiotics.

Great that you have your own space now and that DH and Ds are with you :)

Going to go and boil up some rice and give him that down his tube see what happens. Heres hoping it's not same as yesterday or I suspect it will be hospital for him.......

2old: I did make my own last time we ran out! Pharmacy are a bit mean with the dioralyte. I went yesterday to get it on minor ailments (get it fro free basicaly. Not sure if its the same in england). Anyway they tried to give me a box of 6. If he's on dioralyte only we use 8 sachets per day!! Can't believe how expensive it is though!!

Sneeze: Good luck to your DD with the sleeping.

Ok, away to boil some rice :)

Rackety do gastrostomy vests. £11 each though so expensive. Hence I look on ebay

So nice to be getting into your own home isitme and having DH with you. Big changes and adjustments so good luck with the move.

Sleeping going well so far.

Think you can get dioralyte with rice added. Shouldn't have to pay but it's probably different for you galli.

Racketey's vests are fine providing your DC's gastrostomy is not too high, also they only did them in white not good for a sloppy washer like me Found Fledglings good they do all-in-one vests (made to measure you can cut holes in the appropriate place and buy iron hole protecters they do work but again a tad expensive.

Galli where the hell do you live can I send you some Diarolyte by post.

Isitme hurry up I am looking forward to another GGC. Glad you are a family again.

Oldsneeze all 7 of us have had our jabs.Like loathe all bugs especially gut ones

Here all rumbles on as usual am learning fast about colostomy bags and luckily DD is not bothered but diarrhoea continues.
DS is on good form apart from seizures.
Older Scumbags are busy organising Christmas ARRRRGH
Sleep well if possible

Please don't mention Christmas...already having nightmares, may even be stuck cooking the dinner this year!

Fledglings is good for lots of things SN

Colostomies are good once they have been mastered and brought under control!
beaten into submission

Dd and DGS had flu jab. The tot is fine, DD feels flulike! Know I shouldn't stress but all things pg fill me with terror . Bloody lightening striking etc!

Have bought exorbitantly expensive book from USA (actually it was postage costing twice what the book did) about integrating Reflexes as DGSs Moro is beyond silly now. We'll see

Sorry for the mix up re dioralyte folks. But thanks for the offer 2old. I didn't have to pay for it because it was for a child. Just meant that if you do have tobuy it it costs about £12 for a big pack!!

I am being asked on a daily basis, well several times pervade actually when we can pit our Christmas tree up!!!

Haha pervade for per day. Just love predictive keyboard. Are you in Scotland or Canada or timbuctoo? I am old and fuddled

Oldsneeze join the club I had flu jab in my own right Old fart had it on the backs of DC's
Sorry to mention the Cs word, DS3 came home from day services and handed me a parcel it was my C Present luckily girls twigged and shouted at him and whisked it away. He looked very crestfallen
xx

Awe c**. Hmm
I hope its better this time round lol.

Ds has had the runs today. Very unlike his constipated normal self.

Very shit day.
My curtain rail broke
Major kick off with fam
And then to put the icing on the bloody cake my £500+ phone fell and screen cracked! !!!

X
Ive got a aibu coming up x

Families....who'd have them! The best and the worst in life!!!

Will phone drs about me getting flu jab. Normally do but dithering.

If you drop iPads on the corners the screen cracks probably same with phones. Hope it's insured!

DD did well with the sleeping for DGS hopefully get the first full night in 4 years before new baby appears

Nope no insurance. ...
Its usabale and once I've saved a lil I will get it fixed...

Im going on Wednesday for the jab as I 'qualify' due to kidney problems.

Aibu?
I asked 5yr old niece not to kiss ds as she was ill and off school?

The last time he was ill they were first ds lost lots of weight and the weight loss has really been a big factor of th3 leaking stoma. Hes still not put any weight on in the past 3 months.

Aparantly I was being horrible and nasty when I said it? I said baby dont kiss ds as your poorly.

Just dont get them at all!

!
How is ds today galli?
Granny are you and everyone good?
Sneezesmum wbu???
X

Sneeze: I am in Bonnie Scotland :)

Isitme: Hugs and . you were def NBU!! I did/do the same. Usually with the same attitudes from others......hey ho. It's not them having to deal with the fallout when kids get really sick. My sis is the kind of person who takes her DS to the softplay when he is really unwell - no concern for other folks!!

Ds is 'better' in that he has no cramps and the frequency is less. However his poo is still watery ( TMI - sorry).