NG tube had to go back in

[Sisa]

Hello, our little one year old son has had an ng tube pretty much all his life, due to very poor feeding caused by severe laryngomalacia (floppy larynx) for which he had an operation and reflux (severe too). Both conditions are self limiting and we are besides ourselves that they are both at the mild-end of the spectrum now. So couple of weeks ago we decided to try him without an ng tube as he was eating his solids fairly well. All went beautifully and he started eating even better, just like any other healthy baby (albeit stage one liquidy solids only plus finger food) but he just would not drink enough each day to stay hydrated, only enough to satisfy the thirst he felt. We tried every single drink and cup/bottle we had and bought some more but nothing helped. Babies apparently need 100-150mls of liquids a day per every kilo and he was only managing just over half of that. So the tube had to go back in for liquids and we are now back to square one, with Alex not wanting to eat as much as he did when he did not have the tube. His SALT and dietitian have now run out of ideas so it is now over to his gastric team but until then - could anyone please help what worked for them to get their babies drink enough when the tube came out?

Best wishes to you and bumpy bump for others to see

Ok I am not a medical expert and i am sure you know your stuff, but you are aware that that amount of fluid includes that in his food?

My ds eats lots when he is well (despite being about 16.5 lb at 13 months) and drinks very little, but he wees wees and wees and is certainly not dehydrated. When he is unwell like now) and does not eat much he massively ups his fluid to compensate.

riven you have always replied to my threads so many thanks for helping out again. Alex' gastoentologist did say he would not want Alex to have the gastrostomy until we really knew there was no end in sight to him being weaned off his ng tube. Madmouse thanks, yes we know its total liquids in his food. He can drink about 100mls of water/juice a day just like Riven's ds so the rest would have to be from his solids - on the best day (the day before the tube went back in) he managed 750mls of solids and we reckoned 550mls of that was liquids, so we were still well short of what he needed. We gave him lots of things which were watery (fruits, jelly, ice cream etc) but he did not manage quantities. He started showing signs of dehydration so that was it, tube had to go back in. Interestingly he was very pleased to have the ng tube back in (although of course screamed when it went in) - he keeps grabbing the syringes and hanging on to them for dear life!

Hi Sisa, I'm sorry that i can't offer you any advice but i'm watching your thread with interest.
Our little Alex who is 21months, also had surgery for his larynglmalasia and still suffers badly with reflux. He is under various consultants at the hospital and last week discussions arose with regards to continuous nighttime NG fees, fundoplication and a gastronomy, all of which seem so aggresive and invasive. His food intake is awful but he does drink about 600mls daily (which i am told is not enough).

I hope you don't mind me following your thread. It's just that I don't know anyone who has been through the same thing. So although i have no advice to give...I am pleased to have met you

hello upagumtree, it is great to talk to you, although the consultants say laryngomalacia is fairly common as throat complications in babies go, you can't really bump into anyone with same problems easily. We tried the pump for night time feeds and it was awful, Alex' reflux was very bad then and even the slow trickle of liquid was upsetting him and he kept waking up all night long. we kept decreasing the amount until it was only 100ml per night and then stopped to think (hard when you are exhausted) and concluded that we can feed him that in a bolus feed half way through night and settle him afterwards and that was what we did. The peadiatricians wanted us to try it again but we refused, we just knew what would happen. they also threatened with nj tube but we refused that too, we did not fancy Alex having endless xrays and as it happened our local hospital only had one person who could pass the nj tube and check it so the logistics was not great.
Alex' reflux got massively worse after the ng tube was fitted and then took another turn for worse after the operation. It was only when he started standing up that it started improving. Another major improvement was a new drug they put him on - Baclofen - it is a muscle relaxant not generally prescribed for reflux but it did the trick and he even started eating solids and drinking better after being on it just for a couple of days. GOSH's Dr Keith Lindley is our lifeline, he has always been spot on in treating Alex's reflux and predicting what he would do. so whenever our local hospital would threaten us with invasive things we would get his opinion and carry on with his advice..there is so much to tell..i am not sure what is a safe way to pass on my contact details but if you work it out, get in touch and I will call/email you...

Hi Sisa, I'd be happy for you to email me at

[email protected]

ok, will email you.

Riven, where did you get the computer analysis done? Alex is on neocate so we add it to his solids and that is how we generally work out how much liquid is in them. we think the awful taste of the milk might be putting him off drinking altogether so we are slowly trying him on ordinary milk formula to see if he can digest it now.

sisa my dd has laryngomalacia and reflux as well. She never had surgery for it - just surgical investigation. Basically they said she would grow out of it. She's had loads of issues with apnoeas and aspiration as a result. She hasn't really grown out of it either cos seperate metabolic problem has meant she hasn't erm grown.

So - just to tell you a bit about what we did. We perservered with feeding and early weaning (oo er - shoot me down mn ) Twas on paed's advice. ANyhoo - we got rid of ng tube v early - she had 1 at 2 mths when in hospital with pneumonia but for us at time feeding really was the be all and end all I dunno - I suppose it meant that if she didn't have the tube she was feeding well and really wasn't so disabled after all. Pah!

She had loads of chest infections and pneumonias, not to mention water infections as a result of not drinking (in connection with kidney reflux she also has) Her lungs and kidneys have been damaged by this

She now has g tube and it really is best thing ever for her. It doesn't interfere / affect her eating. She still does that

Am not banding this about as advice for you - only in that tube not always bad thing. My dd is v complex so may be nowt like yr child at all.

pixie when you say that your dd hasn't grown due to a metabolic problem do mean she literally hasn't grown or her weight gain is poor? I only ask because alex' weight gain is dreadful and atm the consultants are not sure why.

Riven you must have a good dietitian. I will ask ours to do it. so far we provided her with diet sheets but she just has a quick look at them in front of us. She was the one who told us to start cutting down on milk so that he would eat more solids (yes makes sense) but forgot to say..by the way you'd better replace the milk with water or juice or watery solids. so really we were dehydrating the poor boy for weeks on end, how dreadful is that - doing that to a baby with a tube fitted! He did not really start eating more when he got less milk, only when the tube was out. and only when it was out did it occur to the dietitian to actually check how many liquids he was supposed to have.
upagumtree apparently there is a calorie supplement (duocal) that you can get prescribed if it is just a matter of your Alex not managing enough calorific solids. would that work? We tried adding to alex' solids oils (rapeseed etc) but it put him off eating even more.
We asked for the gastic tube and gastroentologist said that is certainly what he would do if we really wanted it but he warned us about the high risks of infection and wanted us to wait for a few more months and then said if there is no end to him having to rely on ng tube then that woudl be the right thing to do.
pixiemason did you get second opinion on the surgery for larynx? They would not operate on Alex to start with but he just kept getting worse and worse and then when we saw the surgeon he was prepared to operate on him that day, he was in such a state by then. It was a really simple procedure, over in 40 minutes flat and Alex' quality of life improved massively after it.

Hi Sisa, yes the powder supplement were discussed with us last week but not yet prescribed. We are having probems accessing an appropriate/paediatric dietician and with Alex being reviewed by so many consultants no-one is taking responsibilty for decision-making. He is already on Infantrini high calorie milk but this was also discussed last week and they may change this too. We are seeing his ENT consultant at the end of this month and there are plans to merge with the surgical team to perform an endoscopy if ENT perform another fibrescope. Everything is up in the air atm which is so frustrating!

upagumtree - both really. Tho weight not too bad for her size. She has been in same size clothes for 2 and half years

sorry to hear that all is up in the air. Can empathise with what you say about overall decision making

sisa - no never got a second opinion

upagumtree it must be really stressful coordinating all of the care. One of my friends is considering setting up a charity to help parents with just this - getting hold of the appropriate experts and chasing community nurses, gps and pharmacies for supplies of drugs & equipment. For many months we felt like PAs for Alex, we were constantly seeing someone so hang on in there. Have you tried going through your GP to get referred? Good luck!

Although some consultants do not agree with this, Alex' cardiologist, gastroentologist and ENT surgeon do - just the simple effort of breathing through undeveloped larynx consumes huge quantities of baby's energy so the poor things need much higher calorie intake than your ordinary baby of the same weight. Alex had various investigations on his heart - and we were told it got squeezed into a sausage-shape by the over-worked lungs! It took Alex ages to pick his weight up a bit but he is still at the bottom of the charts.