Has your baby been fed through an NJ tube?

[spotofcheerfulness]

Just after some advice really - DS2 is 10 weeks old, been diagnosed with severe acid reflux and a hiatus hernia and, having been fed through an NG tube for a week has now (at last, after 4 botched attempts) got an NJ one down him.

If I go into the shoddy care we've experienced I would get into rant mode and it's not v helpful, but if you are able to help with any of the following questions I've got I'd be really grateful.

• How long did it take to work? He only had it put in 36 hours ago but seems in worse pain than ever. Is definitely farting loads more. Is increased wind typical and is there anything you can do about it?

• We've been told it may be in some time. We want to take him home and can be trained up to use the feeding system. Have you experienced this and how did you get on with it at home? Did you have any difficulty with your baby pulling it out? (Ds2 has pulled his out several times so far, and it's hell getting it put back in)

• The point of feeding this way is to give his oesophegus {sp?) a chance to heal. If your baby had an NJ because of reflux, did it work?

• Any other tips - things we should know at the start?

Many TIA.

Bump

Hi spot - we had a year of feeding dd by NG but no experience of NJ (that sits further down does it?). I can't really help as dd had her tube for other reasons although we did use the pump at home, also syringe fed during the day so she was off pump. I didn't train to repass the tube (it was many years ago and they didn't train us then); I'm not sure I could havedone it anyway as I've had one myself and it's pretty unpleasant having it passed.

You could maybe repost in special needs - there might be someone who can help further over there.

Oh that sound really hard, I am so sorry you're having such a difficult time. I have no experience of tube feeding but some with reflux.

What's your DS getting through the tube? Is it EBM or formula? If the latter, has he been assessed for cow's milk protein allergy/ intolerance? This can complicate reflux and also cause non-acid related oesophagitis.

Thanks for your replies - Narmada he's on Neocate which I think is the most hypoallergenic thing around, but doesn't seem to be making much difference.

I wonder if the hiatus hernia is making thing more tricky...

SMBK - we had the syringe thing when he was on NG too, but unfortunately you have to do continuous feed with NJ as it goes into the small intestine and it can't cope with big quantities of milk at once. So we're effectively stuck in the house I think, unless anyone else has experienced otherwise?

hi there,

sorry to hear about your little one :(

i have no experience of the feeding tube but my ds also has severe acid reflux and a hiatus hernia he is now almost 2..
what made them decide to tube feed? was he refusing feeds?
by 13 weeks my ds was just awful and surving on around 10 ounces in a 24 hr period he was constantly in pain but i have found it very difficult to get the treatment he needs, it took till 8 months for them to discover the hiatus hernia after that they took us more seriously, he has been on every med and milk going and still struggles to eat and sleep properly etc.. he had a ph study and endoscopy last week so we are awaiting results!

hope someone can give you some advice

xx

Hi Twilight, so sorry to hear you're in the same boat two years on .

We had the PH study last month, showing severe reflux, but there's not much they can do for that other than put him on more meds, which it sounds like they're already doing for your DS.

We're also having the scope next month, which i think should show the damage to the oesophegus. The reason we're on NJ tube feeding is because he was not taking in anything at all and was still in loads of pain.

I am shocked it has taken 2 years for them to do the PH test and the scope. That's really bad.

I think they try all the medical management (drugs, changing milk, tube feeding) for as long as possible because the alternative is surgical repair for the hernia. The surgeons discussed it with the docs at our hospital, and they're really reluctant to consider it in such a young baby (though that might be an option for your DS). Maybe the scope might show the size of it. Also the operation is really unreliable and has a high failure rate as it's hard to tighten the muscle exactly rightly, so they want to exhaust all the medical routes first.

I wonder if they'll suggest NJ feeding for your DS? It's a bugger to get it in the right place, and probably hard to keep in (I also have a 2 year old and can't imagine him keeping his tube in), but might offer some relief from the symptoms?

At least if he's on neocate that rules out the milk issue. I think hiatus hernia can in itself cause or worsen reflux. Is that what you meant about making it more tricky?

Really sorry you're having such a hard time. Could you ask for a referral to Great Ormond Street or are you just too far away? You're entitled to a second opinion in any case.

We're in Brighton, Narmada, which is supposed to have one of the best children's hospitals in the area, outside GOSH. . I think the medical care is actually ok, though you have to be on them for the slightest thing and do most of the thinking for them. I just get frustrated that they react to the symptoms (such as offering calpol if I say he's in pain) rather than thinking why it might be (e.g poor placement of the tube, irritation in his nose, hernia etc).

I think the HH can worsen reflux, at least that was the reason they gave for his meds not being effective, but as they're not keen to look at surgical intervention for that we need to just live with it, I think.

The consultant we saw said things like car seats and baby chairs etc, make things worse (we could have told him that!) but not much to be done on that score, really. I think it's a case of sitting it out and seeing if this NJ feeding is working, but there's nowhere else to go on the medical route if it doesn't...

Hadn't thought about referral to GOSH for 2nd opinion though, that's food for thought.

Hi, so sorry to hear you are going through this.

Couple of questions, is it normal reflux with vomiting or silent?

A book i highly recomend is "life on the reflux rollercoaster" It is written by a mum in america whose little one had severe reflux, i found it so helpful to read that other people had been through what i had. If you cant get a copy happy to post and lend you mine.

The wind is a side effect im afraid, and it may settle down but never disapears.

You may want to ask for enfamil ar formula. It is a thickened formula and stays down alot better than anything else.

What meds is he on?
I recomend that you invest in a decent upright sling and prepare to spend the next 6 months or so with a baby on your chest and a shit load of hospital appointments.

I could waffle on for ages for tips etc but not sure how much you want right now.

My ds is 3 and we are just seeing the light at the end of the tunnel.

let me know if you want any info etc.

hth.

Hi Amyjo, thanks for replying - it's silent reflux and that book sounds v interesting, I'll see if I can get a copy on Amazon.

Wow, that's long-term, 3 years old, but I'm v glad you're seeing an end to it all. He's been in a sling for a while but it's hard when he's permanently hooked up to a machine. I'm hoping it won't be for too long but depends what the scope reveals.

You're right about the hospital appointments though. It's really full on. I feel most sorry for my toddler (who had relatively mild reflux himself) - he's really getting a rough deal attention-wise and I wish I could be around more.

Have to go into hospital now as DP's shift has ended, but will back back online on Tues night, thanks everyone for your support and advice .

hi spotofcheerfulness,

i think its awful they have taken 2 years as well! it should of been done at 5 weeks when we were right in the middle of this nightmare,there was talk of a feeding tube at one point but we were left without being seen for months at a time and kept being told its normal most babies have reflux etc.. for 15 mopnths i just fed him milk every 2 hrs a couple of ounces at a time.
we are under chichester hospital but for his ph study and scope we were refereed to brighton childrens hospital who do you see there? we saw dr butt who was really helpfull, i think if we had been there from the start then this wouldnt of taken so long..

i know his hernia is 2-3 cms which apparently isnt huge and like you say surgery really is the last option, he did tell us that there was no obvious damage to the eusophagus (i know thats no how u spell it but cant be bothered to check lol)but we need to wait on biopsy results for a few other patches he found in stomach etc. i watched his ph monitor and for most of the next day after it was fitted the acid levels were from 0.1-4 ish this happened as soon as he ate his first meal (if u can call it that) which has always seemed to be when he is at his worst.

there is a great site called little refluxers i know there will be people who have experience of the feeding tubes over there so take a look if you can.
xx

Has your baby recovered? My baby has been showing similar symptoms and is on NJ as well. Just wanted to know what happened

@Apoo this is a great group to answer tubie questions.
I'm guessing it's quite a niche topic in MN!
www.facebook.com/groups/177590912307248/?ref=share

Thanks a lot