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Gastrostomy/ tube feeding support group...

999 replies

Isitme1 · 03/06/2012 12:01

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!
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Isitme1 · 07/11/2012 14:52

Thank you everyone.

They put a smaller one in as the 2 stuck out too much there was about 1/2 inch gap in between skin and button. Tge 1.7 has now started to stick out a lot too.

He has got slow gastric emptying. Weve had (on more than one occasion) food come out 13 hours later excatly how he ate it. (Hot dogs, chicken, noodles, fish etc)
He was supposed to have the gastric emptying study buuut hes got to sit for a very long time which he wont do.

His gastric wanted to do fundo and sort his gastric emptying out via surgery but he wants to see how ds goes as he puts on weight.

Ive asked one of the other consultants if it was best to do another endoscope to see from the inside whats going on. Hes had irritation on the inside due to his peg and he seems to still be in pain while feeding sometimes too. On a few of his vests hes had his milk plus meds and some dark brown blood type leak.
Ive taken pics of everything so they can see how bad its been.

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2old2beamum · 07/11/2012 15:11

Just a thought Dearest GGS had pneumococcal meningitis like DS and we have not had the same problems but none the less feeding issues. DS has a very small stomach and slow emptying. I am wondering if there is a link.
xx

Isitme1 · 07/11/2012 15:58

I will ask tomorrow thanks granny x

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sneezecakesmum · 08/11/2012 20:13

DD has seen the dietician and mentioned blended diet for DGS and been told not to as it may block the tube. No suprise there then! DD is on the BD UK site and is going to go for it anyway and just take it slowly and sieve the blended food to make sure it doesnt block! She is sick to death of the puking! She will ask paed about domperidone etc but will start with baby rice and purees. Smile

2old2beamum · 08/11/2012 21:07

Oldsneeze can understand your frustrations WHAT THE HELL DID THEY THINK WE DID DECADES AGO used a bigger tube doh
Isiitme hope things went OK today foe DGGS love Granny x

Received copy today of DD's referral letter to GOSH Sad but Smiley face at least some peoplle are now listening.
DS all I can say is bloody epilepsy

Tootsandblanket · 08/11/2012 21:27

Hi we have had and continue to have lots of problems with a leaking peg site. As soon as DD starts to brew something the area around the Mickey button starts to break down. We have had some success with controlling this by:
Increasing her omeprazole to highest dose possible.
Using Allevyn gentle dressings around the area and changing these regularly.(4-6 times a day)
Putting an extra 2-3mls of water in the balloon, decreasing rate of her pump, and taking the button out for 20 mins ( this was a tough one) to allow the hole to close slightly - i think others have suggested these too.
Once it flares up we swab the site and send it for our GP- pseudomonas is a recurring problem and has made it bleed freely and become pussy- on the skin around the hole and also internally. have you swabbed it? Or am I being a bit basic for you??!
I hope it improves soon.

Isitme1 · 08/11/2012 22:40

Hi all dr said he will put peg back in and do some investigations.
In the n3xt few weeks.

Should b3 next week.

Ive tried all that toots thanks. Its beyond being helped at home now.
Thanks for the info though
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BeeMom · 09/11/2012 02:25

I have known 2 children for whom leaking was an insurmountable problem. The first one had the tube removed entirely and a new stoma created. He recovered well and never had another issue with leaking. The second had the stoma tightened up with a stitch or two both internally and externally.

Both were surgical corrections, but both were ultimately successful. Long road, though...

Isitme1 · 09/11/2012 08:37

They are fairly quick with sending an appointment out. Its just hes lost a lot of weight and its going to take a long time to get him to look healthy again
How is everyone
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Sneezecakesmama · 09/11/2012 21:05

O bless little DS. Can't bear it when these kids lose weight and look so skinny! It sounds as if they want to do the op again as it is such a problem. hope it gets sorted without it though, bet you are so fed up with it all now.

Just so relieved DGSs PEG is behaving itself even if his stomach isn't. He has gained weight but still looks on the reedy side. DD is going to start the BD slowly and see if he can have meds too if the puking continues.

20ld. Epilepsy is the pits Sad. Feel for you all.

2old2beamum · 09/11/2012 21:54

Have tried before but computer threw a hissy fit!!
May be a little pissed Maybe a glass of Wine too many.
DD has come home with school snots quite common!!
DS came home very grumpy therefore suppository.
Stress is not good at my and old farts time of life ----HAHA
Going to get 3 top bedrooms decorated old fart's arm twisted behind back I have won Grin
Sorry for grumps but you are all I have Smile
How are you Grandaughter Much love to you all XXXX
Hope all are well
Sleep well all you little Scallywags
PS I don't think I am that pissed to write this load of rubbish Grin

gallivantsaregood · 10/11/2012 09:09

Isitme: good they are going to investigate.

Sneeze: typical dietician response..... Grr! If your daughter has a vitamix or a villaware blender she will not need to sieve. With baby rice she won't even need a blender! Pm me if you want and I am happy to give you my number if your DD wants to chat. We have been doing BD for 2 yrs now. We started with a hand blender and have NEVER sieved....... Too much of a FARC for us, and haven't blocked a tube yet..... Xx

gallivantsaregood · 10/11/2012 09:09

Faff not FARC!!!!

gallivantsaregood · 10/11/2012 09:10

Faff not FARC!!!!

Sneezecakesmama · 10/11/2012 21:11

Galli. Thanks. DD has ordered the book from amazon recommended on BD UK. She will have coke handy for blockages. No vitamix yet as seeing how it goes. The puking is beyond a joke now and I am sure if he has more nourishment during the day he will have more energy as he flags really quickly and with school looming it needs sorting. Will let DD know Smile
Xxx

gallivantsaregood · 10/11/2012 22:06

Sneeze: tell her to watch the fats too..... Very hard to digest. Recommendations for children is i think 30% if daily calories from fat. DS only manages about 15%.... Hope she gets on ok xx

gallivantsaregood · 10/11/2012 22:06

Villaware is being sold somewhere for £40 atvtge moment....

sneezecakesmum · 11/11/2012 12:11

OOO will look at Villaware. Will look at the fats issue as DGS has slow gastric emptying (I think) Confused Dont know what he has really apart from reflux.

20ld grump away. We dont mind Smile
cant get my old fart to do much around the house!!! Except get underfoot! Grin

gallivantsaregood · 11/11/2012 12:48

Sneeze, if he has delayed gastric emptying there are a few foods to completely avoid - broccoli and oranges. Seems they can result in things called bezoars which are like little stones in the tummy. google 'Gastroparesis foods to avoid' for more info. :)

sneezecakesmum · 11/11/2012 21:12

Will do Smile

He may not have slow emptying but we cant tell as he pukes so much Grin

tomorrow may be the day we have a go!

gallivantsaregood · 11/11/2012 23:19

Sneeze: good luck if you do have a go. Banana is always tolerated very well intros house and is dead easy to blend. Xx

gallivantsaregood · 11/11/2012 23:21

On barium study DS doesn't have delayed emptying. However if we give him anything at all and no Domperidone, it just sits in his stomach!!! I think the barium somehow irritates his stomach into working!!!

Isitme1 · 12/11/2012 09:04

Ooo will have to google that too.
How is everyone?
Ds keeps pointing to his button and says hurt.
He now says stop it, no way, haha, love youif hes in the right mood
He loves pretending hes a cat too.

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BeeMom · 12/11/2012 10:26

Isitme barium (as you may well know) is VERY heavy - often the study is normalized by its weight alone forcing it out of the stomach. That is one of the main reasons that the emptying study can often yield decent results.

Bee was able to manage a 2 hour+ study with creative redirection and DVDs, you might be surprised what your DS can do... while I know it'll be tough, I would recommend trying anyhow. If nothing else (and yes, I am terribly jaded) they will not be able to write in the records "testing refused by mum".

Isitme1 · 12/11/2012 16:39

Hes had the barium swallow done

That was done when ds was about 6 months old I think. That confirmed reflux and then he was sick.

We tried the barium meal in February and he just wouldn't eat the food at all or even drink the juice.
Ph probe has also confirmed he suffers from acid reflux even with his maximum dose of meds.

Going to see what they will do next

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