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Gastrostomy/ tube feeding support group...

(1000 Posts)
Isitme1 Sun 03-Jun-12 12:01:16

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!

Isitme1 Tue 05-Jun-12 08:42:39

I clean it twice a day and it was fine yesterday?

I've never tried blended diet but I have however mixed some herbal immune system stuff with baby food and put it down the tube.

With regards to keeping tube out of the way:
Cut a small cut underneath to the side of the peg site ( ds tube is in middle above belly button so I've cut holes on the bottom right hand side) and I either tuck the rest into his pants at the toP ( in-between pants and vest not skin) or I use mipore tape and tape it to vest.
Just make sure it doesn't pull ( normally doesn't)

Isitme1 Wed 06-Jun-12 15:25:13

Venting tips anyone?

Sneezecakesmama Wed 06-Jun-12 18:26:27

Sorry don't know anything about venting.

Though we were going great guns today. dGS at some baked potato and cheese, followed by puréed fruit, then a chocolate petit filous......then he puked the lot. O well 'twas a bit adventurous maybe! At least we could top up with the peg afterwards! Would have been soul destroying otherwise.

Isitme1 Wed 06-Jun-12 19:12:18

That is one 'perks' of the dreaded peg.
The first day he had it in I was in awe.
I just couldn't believe he had 15 oz in 24 via tube.
By mouth at most he would of had an ounce.

Absolute life saver!
But I do miss feeding like a normal child would take.
I feed my nephew and I just forget how I dont have to fight to feed a normal kid.
If that makes sense?

2old2beamum Wed 06-Jun-12 19:23:37

Yes what you say does make sense I think mothering is nurturing and doing it by tube seems unnatural but your LO's needs comes first which is being a mumsmile
Re venting I gently aspirate with a 20ml syringe or just hold the syringe with no barrel just above the abdomen and the air comes out.

Minimoan Thu 07-Jun-12 00:28:47

Re: Venting

Use a 60ml syringe - smaller syringes cause more 'pull' on the tummy. Try to recline child/lie flat if possible. Give tummy around button a gentle massage if necessary to move air. Encourage child to bring knees up to tummy (if possible) or make them giggle (forces air out)!

Method 1: Attach to the tube and gently pull back plunger.

Method 2: Attach syringe without plunger to the tube. Hold syringe longer than stomach and allow gravity to expel air.

Hope this helps


Isitme1 Thu 07-Jun-12 07:36:15

Thanks for that.
In the hospital they just said try an empty syringe and that will do the trick.
How's everyone today?
Ds has been awake since 4am :|

2old2beamum Thu 07-Jun-12 22:18:59

I too find the enpty barrel works for DD. However with DS who has a jej tube I have to use to use a 20ml syringe as he has to have his stomach aspirated 6 hrly.
On the subject of jej feeding I have been advised to give drugs at the rate of 4mls/min. He has 26 doses/day in total total 2x 50-60 mls a time divided 8-5-9-4 doses IYSWIM. Problem is I have been told to give 5ml flush between each drug which will mean he will need ovet 100mls at 06.00 &1800 hrs needless to say I don't. What do you do? He can only tolerate 53mls/hr milk

Tooloudhere Thu 07-Jun-12 22:46:34

2old not jej but we have g tube with very limited tolerance for volume. When it comes to meds we don't do all the flushes as like you say it is impossible. There are some that really need the flush which we do. Can you do smaller flushes or find out which meds really need them (tube blockers) or need to be separated.

The only time causes trouble is when in hospital as you they love everything done to the letter, I.e. their letter. They accept that it just doesnt happen with ds so the compromise is that I do his meds as I would at home, they prepare and bring the syringes according to their rules and I administer so they arent doing it. Part of the argument they used was that the meds shouldn't go together but how would it be any different to taking them orally? If meds should not be together and I know some can't then they need to be done at totally different times.

Mini rant over, can you tell this is a bugbear of mine? Just love impractical protocol.

Oh and venting if required is just an empty 60ml syringe held above tummy, works well for us. On a note of caution be ready to clamp quick if your dc looks like they may sneeze when there is an open syringe in place, the mess was unbelievable.

Isitme1 Thu 07-Jun-12 22:57:02

Ds is on 175 over the hour x 4 a day plus flush. He's doing very well with tolerating it apart from night feeds.
He can eat by mouth but his aversion is they bad that all he's had today is plain chappatti. He's on reflux meds.
They are doing the gastric emptying scan to check motility if gut ( any experience anyone)
With him having 700mls a day of a pre-digested milk you would think he would of put weight on but nooppe.
He was doing good on baby food into mouth via syringe.
Ive been thinking about using baby food down tube.

Oo can you explain aspirate too please blush x

Isitme1 Thu 07-Jun-12 22:58:18

Dr at hospital had to tighten the peg thing and he opened clamp and ds stomach juices went flying lol

rosielum Fri 08-Jun-12 07:15:43

Isitme, have a look at the blended diet uk facebook group...lots of people start with putting baby food(with oils etc added for cals) down the tube then end up moving on to blending food to put down the tube. Its worth thinking about if your DS is not thriving on formula.

Isitme1 Fri 08-Jun-12 09:45:20

I will look at that.
He's had no oral breakfast today.
He had no oral intake apart from plain chappati ( the piece he had was no bigger than little finger)
Thanks for that

2old2beamum Fri 08-Jun-12 13:04:58

Isitme DS 13 is on 1100 mls/day but with swimming/showers/meds he is usually shy of this he is small for hes age (9-10) but sa i am the sillly fool who humps him around if DH not here I am not overly worried, his hair is shiney nails strong and skin good. Try not to worry too much about his eating.
To Aspirate is to empty stomach of gunk as he refluxes and gets rid of air.

TooLoud yay another rebel, I've been doing it for 2 years and have not yet had any problems (famous last words) Like you in hospital I just put up with the sharp intake of breath and the sucking lemons lookshock
Keep smiling everyone smile Guess who has recently learnt to do smileys

2old2beamum Fri 08-Jun-12 13:09:28

BTW liquidised was how we tube fed children years ago didn't seem to do them any harm and they thrived (not babies)

rosielum Fri 08-Jun-12 15:32:21

Yes before formula all tubies had actual food down the tube. There is an excellent new book called 'complete tube feeding' by Aadhaar O'gorman that is so useful.I think formula is fine but real food will always be more nutritious. Dieticians are not trained in this any more so see formula as the only option!

Isitme1 Fri 08-Jun-12 15:44:03

Oo ok. The only reason why I worry is I just don't want ds to go completely tube fed. I want him go have oral diet too. We've been out today ( town) and I know fast food is no good but he likes kfc chicken popcorn. Which he put the food in his mouth and spat out.
I've bought noodles for tea ( another fav) let's see if he eats them or just sticks it up his nose or in his ears ( another fav for him)
His dad doesn't understand the stress that comes with it all. He just likes blaming me. He said if ds stops eating by mouth its your fault as you went ahead with it ( he's not here he's in a diff country)
I've been told that his intake was soo low and water intake was close to nothing they don't know how he survived for so long. Gp wouldn't listen to us.
Rant over (ish lol)

Isitme1 Fri 08-Jun-12 15:45:29

I forgot what I was saying lol.
I meant to say if I start with a bit of baby food I'm scared it will block tube. He's got a corflow peg and it would mean surgery of all else failed

rosielum Fri 08-Jun-12 17:10:22

Isitme, yes we have a different situation in that my daughters tube is for life and I'm looking to find the best quality version of tube feeding for her.
It sounds like you have done the very best for your son, you couldn't let him carry on basically starving and a peg is so much better than an ng tube for the orally averse. Have you met with your DSs paed recently? Is he seeing a SALT for feeding therapy?
When you say he is uncomfortable at the last feed maybe the overall volume of feed is too much for him? My daughter was like that when she was on a feed that required her to have a larger volume than she could tolerate comfortably. Sounds like you really need to know what his gastric emptying/motility is like.
Hugs to you x

Isitme1 Fri 08-Jun-12 17:18:08

We are seeing his gastric pead On the 21st this month.
Ive not recieved a letter just a txt lol.
If we go ahead with the surgery they have said tube will bs permanent.
He's had no tea.
He won't eat the noodles.
I was spending atleast £100 a week trying new food for him to eat.
He won't let me brush his teeth either.
Salt is involved. Seeing her beginning of next month again I think.
She is encouraging messy play. He won't do it.
She said kids who have food aversion don't like get face or hands dirty.
To me it's like he's looking for another way for him to eat ( putting food up nose and ears) as he knows it hurts if it goes down throat.
He's happy just sat there in his high chair.
He's chucked rest of food on the floor

Isitme1 Fri 08-Jun-12 17:27:41

I had a jar of apple and pear baby food. I watered it down with warm water and tested it to make sure it wasn't too thick.
It's gone down fine smile
Just about a 1/4 of a jar :D

2old2beamum Fri 08-Jun-12 17:37:02

Well done Mum and DS grin
Your chats have kept me going, all of you.

rosielum Fri 08-Jun-12 17:55:03

What surgery is it your DS is going for? Feeding tubes needn't be permanent and your DS is so young still. SALT provision is so poor on the NHS. I have an 11mth old as well who just eats normally and i couldn't believe how ease it was to feed her when we started weaning as it had been such a nightmare with DD1. It's very stressful isn't it as its such a primal thing feeding your child.x

Tooloudhere Fri 08-Jun-12 17:59:10

The thing that I hate the most about having a sn dc is that it seems as though others think they have more of a say in your child's upbringing than you.

I can't at this point do blenderised diet due to allergies and there being too much else going on for him but it is something I have considered and will probably look at again. If it is done safely and with consideration then IMO no professional should be objecting. I wouldn't take anyone telling me that I couldn't feed any of my other children anything other than formula. I just hate that people think they 'own' him, hell I don't own him but as parents we should get the casting vote, it has took me along time to stand up to that outside of the house.

2old (no offence meant seems weird shortening your name to that!) I am a rebel and proud, opposite to my younger years I like to think I rebel for a reason now. Just for you smile

rosielum Fri 08-Jun-12 19:35:56

Yes so true Tooloud. My DD had a rectal prolapse because she was so constipated on formula and when i told the dietitian she said 'well with your daughters level of CP constipation is to be expected, we'll put her on miralax'. That was it for the formula, DDs diet now always has plenty of whole grains/oils/free water and prune juice if needed, when I told the dietitian she acted like i was being some kind of indulgent parent. I feel like the 'professionals' all too often don't have the best interests of the child at heart but rather are following protocal. rant over!

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