Anyone with a baby with severe laryngomalacia and reflux requiring NG tube feeding?

[Sisa]

My ds was diagnosed with severe laryngomalacia straight after birth. To cut the long story short, his weight gain was so attrocious (also partially caused by delayed diagnosis of lactose and cow's milk protein intolerances) that he had to have surgery on his larynx at 11 weeks and a nasogastric tube inserted to top up his oral feeds. The op corrected his breathing to a degree, but we have not to this day succeeded weaning him off the NG tube (he caught a nasty infection a few weeks after surgery and that marked the end to his oral feeding). Reflux, which goes hand in hand with laryngomalacia, continues to rage. ds is not responding to any medical treatment (Omeprazole MUPS and Domperidone, both top doses adjusted acc to weight and Neocate formula) and does not tolerate pump-feeding. The only things that help are burping him endlessly during & after feeds and letting him to sleep in his car seat for half hour or until he is settled enough before putting to bed. Any other tips? His consultants think he will probably need the ng tube until he is fully weaned onto solid food and are now considering surgery. Anyone's babies had surgery for reflux? How successful were they? Any tips on tube-feeding? Ds' take an hour on average! When did your kiddies grow out of laryngomalacia/reflux?

Hi Sisa, my DD2 doesn't have laryngomalacia, but she has hypotonia, had reflux and was NG fed for 18 months.

Her reflux didn't improve until she started sitting, and feeds took 30-45 minutes depending on the volume and her refluxing.

Anything I can help with just shout.

Agree about reflux getting better once that they learn to sit straight. The noisy breathing at night was gone by the time he was 18m old

DS never had to use a tube, he hads surgery being about 3m old which made the reflux worse. He had to spend at least half an hour after feeding, sitting in a baby chair to prevent him from bringing everything up. I'm afraid he didn't put any weight on on the three months after the surgery.

How old is your child?

Hi Sisa, didn't want to ignore your post, even though I can't be much helpalthough DD had reflux and laryngomalacia she didn't need an operation and was able to get rid of her NGT at 6 wks. The laryngomalacia caused a croupy-sounding cough. The reflux seemed to improve when she got more mobile at around one year oldshe has hypotonia, so she was late to sit up and crawl.

Suggest you post on special needs, there may be someone around who's dealt with laryngomalacia/reflux.

thanks so much for the lovely messages. Surgery for reflux has so far only been mentioned in general terms - I need to read up a bit about them. I would certainly prefer to wait for a long while longer before resolving to it. DS is 6mths but is not solid enough to sit upright just yet. Encouraging to know that that will help.

Sidge & Arabica, how did you manage to get rid of NGTs?

DS has now completely lost the suck&swallow reflex and now only chews the bottle when I put it into his mouth. One of the nurses suggested getting help from speech and language therapist to train him to drink from an open cup - any experience anyone?

Chandra, sorry to hear your child did not put any weight on for so long after surgery, that must have been really stressful - did you resist the NG tube option or was it never suggested? We were literally marched by the consultant from the outpatients' onto the ward to have the tube fitted!

Yes same happened here with reflux getting worse when NG tube put in and then it got slightly worse after surgery and completely out of hand during/after the infection.

Good news is that DS has managed to put some weight on and is now on 25th centile. Weaning is slow, but at least he can swallow small amounts! How did your laryngomalacia kiddies take to weaning?

I will also post on special needs, thanks Arabica.

DD was able to take in and keep down enough milk for her to feed orally, although it was really hard work and v stressful.

SALT really helped BTW.

My DD has a genetic condition causing her hypotonia, and had no suck reflex at all and an unsafe swallow. We couldn't feed her orally until she was about a year I think it was. Then we discovered the Haberman feeder bottle which she got on brilliantly with, to the extent that she avoided having a G-tube fitted. Once she got on so well with the Haberman, and her tone had improved as well, we managed to reduce NG feeds and then finally manage without it.

You might want to try and get a Haberman? They aren't cheap but are great for non-sucking babies as they have a different teat which the baby can sort of chew, and you can help by squeezing it. It has a valve so there is no free flowing liquid, so they don't choke and can control the flow. Have you also asked about trying a thickener such as Thick and Easy? We found this helped her reflux as well.

Sisa, can't help with any of your NG questions as dd's laryngomalacia is not severe (moderate) but just to tell you she's now 21 months and has been walking a couple of months - we're thinking of weaning her off the reflux meds and seeing how she does.

She was undiagnosed until bronchiolitis at 4 weeks, which was very serious for her and she was on CPAP for five days. Even then, her reflux went untreated for a further four weeks

I was told nearly all kids with laryngomalacia have reflux, and that the two usually improve around the same time - and that being upright/walking is a big improver of both.

FWIW dd's night time breathing improved a fair bit around the 16 month mark, but that was partly because we got to spring and she stopped getting endless viruses - winter was quite hard work. She's still noisy when she has a cold, but otherwise is fairly quiet even at night. So my guess is the larynx is hardening up now - but its still noticeable (GPs always hear it straight away). My feeling is that it won't be a thing of the past until she's around 2-3 yrs, but I know that can vary hugely - lots of kids get past it faster.

Wishing you and your LO well, sorry can't be of more help and glad others can!

I can only answer re the NG tube. My dd4 has a heart condition and was NG fed for quite a while,in fact she was so bad she had an NJ tube for a while (goes beyond the stomach). The only way she could tolerate feeds was 24hr pump feeds at an incredibly slow rate. She had a gastrostomy 18 months ago and her reflux definately improved.

I will try the Haberman and chase for the referral to SALT. Interesting to know re the the thickener - did you use it whilst tube-feeding? Our dietitian said to us a while back that they can not be used with ng tubes...

Hi Sisa

Many babies who are NG fed loose the ability to suck and parents can find this quite distressing when their little one keeps refusing a bottle. However, it is quite normal for this to happen and these kids do better when they wean and sort of 'bypass' bottle feeding altogether.

You can use some thickeners with NG tubes but it depends on the size of tube and the amount of thickener i.e. the thicker the feed and narrower the tube, the more likely it is to block but it can be done!

How is your DS being fed....gravity feeding? Why is he unable to tolerate pump feeding. What volume is he having, how often and how fast? Sorry there are so many questions but unable to get a full picture without this info.

Definately need SALT referral and do you have a local Children's Community Nursing Team that you could be referred to?

Sisa - we had very thick ng feeds for dd. She didn't have laryngomalacia but she did have reflux and was ng fed for over a year. Her feed was fortified with maxijul and calogen to help weight gain as she has heart problems. The additives made the feed very thick and her daytime ones were syringed in as it was too thick to gravity feed. The thickness helped her reflux which I agree can be made worse by an ng which often increases the gag reflex. We used a painfully slow pump feed overnight.

We had help from SALT to get dd off the tube. She didn't completely lose her suck but had a degree of oral aversion. It was pretty much play based around her having control over what went in her mouth. We did miss out bottles though and went straight on to cups as dd didn't have the strength to suck. Solids if you could call them that initally came along very late - maybe 15 to 18 months.

You can use thickener with NG feeds but it does depend on the fluid being given and the bore of the tube.

I found it didn't need to be terribly thick to help matters, just thick enough not to splash back up! It took a bit of trial and error. Then we definitely needed thickener when we progressed to oral feeds, again we played around to find a consistency that suited her.

Certainly using a pump helps to get thicker feeds down, rather than gravity feeding (we never had a pump, even though she was NG fed for 18 months ) and you can set them to go very slowly, even 10-20 mls an hour. Is it the volume he can't tolerate with pump feeding?

Hello there, I bombarded our community nurse with all of your very useful tips and she agreed that they are all great and has referred DS to SALT, is checking with a dietitian which thickener is the best for him to use and will even bring us the Haberman bottle as they provide them on the NHS(funny how you only get help if you know what it is you want - so many thanks everyone)!

Re the pump feeds - DS was initially ng fed every 3hrs night and day as he had problems with volume. We were desperate to get some sleep so the pump was an obvious solution for his 1am and 4am feeds, but he kept refluxing even on 20ml/hr speed and was missing out on volume. As there was very little milk in his belly the 'empty' sickies seemed to hurt him even more than the 'milky' ones (and at that time he was rarely sick during his night-time gravity feeds). Neither DS nor I were getting any sleep so that was the end of it - I felt I was making him sick by putting him on the pump just so that I could get some sleep. It all felt wrong and now I am reluctant to try it again. Gravity feeding seems to be better as we can watch his body language and stop when he starts struggling, before he is sick. If I overcome my aversion to the pump I might try it again for one of his hour-long daytime feeds (with the thickener) as I could easily switch it off when he struggles...

If you get a thickener for his feeds, you may want to re-consider pump feeds then particularly if the thickener causes problems with the gravity feeds. Just because it didn't work the first time, you shouldn't rule it out altogether (but understand why you would be reluctant to). Also, the combination of the thickener and pump may help immensely.

Are you using plastic or silk NG tubes? Sometimes, one type of tube can affect the severity of reflux over another type of tube? I don't think this is research-based, just something that I've come across working with so many tube-fed babies and children.

Hi CJMommy, we tried all sorts of ng tubes, the silk ones too, and have settled on the plastic Freka Paed tube FR 6,5, 50cm.

We have made a lot of progress with his oral aversion over the last week, he now puts anything into his mouth quite happily, and is able to eat a bit more baby rice. No sucking though, so as you say it may be that he will not re-learn how to do it, and go straight to an open cup.

Sounds like you're making good progress! Wouldn't worry too much about the sucking and hopefully your SALT referral will come through soon.

Hi
I don't know if anyone is still following this thread but I was interested to read what you were saying. I am very keen for any advice for my daughter, Megan.

She was given an NG tube from 1 week old as she had an infection, stridor (floppy larynx and a paralysed vocal chord) and reflux. The stridor was giving her 'blue episodes'and so they weren't sure of how well she would swallow. Her stridor is much better and in theory she can suck and swallow now. Howevr, she wasn't allowed to try the bottle for 41/2 weeks and since then has developed an oral aversion. She will only let the bottle into her mouth and bite it at best when awake although will suck from it when half asleep now and again and take up to 65ml at this time.

She is 12 weeks now so still a little young for a cup but I am very keen for her to take as much orally as possible, even if it is only 5 ml, and if possible get over her aversion. Does anybody have any tips out there who has/is going through the same issues?

i dont know if this will help but this is my story.
My son started noisy breathing when he was about a month old and the docs just put it down to a flem build up. but with 2 weeks he had practically stopped eating and anything he did eat came back up almost instantly. we took him to the hospital and an over night observation turned into 5 weeks in hospital.
he was diagnosed with laryngomalacia and at first they didnt want to do anything, but eventually they realised he needed a feeding tube and then after oxygen monitoring they realised that he just wasnt getting what he needed. one night i sat and watched his oxygen sats drop below 70% it was decided he needed surgery but we still had to wait 2 weeks for the surgery since he picked up a nasty tummy bug while in hospital. once he had the surgery his breathing was better but it took a long time for the strider to totally subside and he had the feeding tube for a few months afterwards.
he developed an aversion to feeding because of the nature of his laryngomalacia he was in a lot of pain when feeding. so we made it a game with the bottle, we played with empty bottles letting him put them in his mouth and see they didnt hurt him. we played with lots of toys around his mouth and noise since he had an aversion to people going near his noise as well because of the tube. eventually we moved to a bottle with milk in it and let him just play at sucking even if he only took 5mls. the more fun we made it the more he took and eventually he pulled out his tube. we decided to give him 24hrs to see how he took to feeding and then have the tube reinserted if he wasnt getting enough. Luckily he did feed properly and we havent looked back since.

Unfortunatly though his little brother who is just over 3 weeks is exibiting the same symptoms and I'm now worrying it will happen all over again. My son's laryngomalacia was severe and i would hate for another little one to go through it.
has anyone else had more than one child diagnosed with it?

Nothing helpful, I'm afraid, but just wanted to wish you both the very best with your LOs. My dd has moderate laryngomalacia and was also diagnosed at 4 weeks, when she became critically ill with RSV bronchiolitis due to the laryngeal complications.

She's now 2, and about to have tonsils and adenoids out because eating and sleeping are almost impossible - especially in recent weeks, with colds and coughs around.

I can only begin to imagine how much harder to manage severe laryngomalacia can be, am hoping someone will be along to offer advice and will keep eye on thread and bump for you.

FrankieDaw, fingers crossed no 'severe' diagnosis for your ds2, and that he has an easier time of it than his big brother.

Forgot to say, Meganmum, 65mls when half asleep sounds like good progress...I know it doesn't feel like much, and I'm no expert, but I would imagine that whatever your dd can do when relaxed/asleep, she will start to do more easily when awake with a little time?

Also, my dd2 was able to take sips from cups I held for her (doidy cup type things) from very young...maybe not 12 weeks though, more like 5-6 months. She saw her sister doing it and was intrigued.

Thanks for replying. I have been off line for a while. Unfortunately 65ml whilst asleep is now down to 0ml. Things don't seem to be getting any better, but we keep trying. The unfortunate thing is that she is happy to have anything in her mouth when it is not feeding time. When she is feeding she will take the bottle in her mouth and also a cup and seems interested in the milk but when she gets any in her mouth she doesn't like it or maybe doesn't like swallowing it - i'm not sure. We are also trying her on solids to see if she would take to it but again no joy. She will taste it and maybe take a little in her mouth but she mostly refuses it. We try lots of fun, singing, playing but she does not want to eat or drink other than 2-4 sips and maybe 1 or 2 tiny spoons of food if we are lucky. I am really looking for advice or tips on how to make eating time different. At the minute we sit up on the highchair and begin with either the cup/bottle or solids and when she gets annoyed then we move on to tube feeding - although sometimes I do both together. This is because a feed takes between 1hr and 1 1/2 hrs for all the milk to go down. She is sick a lot and she doesn't seem to be able to cope with it faster.

I do 5 feeds a day (2 in bed and 3 during the day) at the minute but maybe I should go back to 6 (4 during the day). Though this would mean you feel like you are feeding all day and makes it quite difficult. She is not brilliant at giving out hunger cues either, which makes it hard. For example, she has slept through the night since we brought her back from hospital and never woken up crying to be fed.

I have given the cup and spoon to hold when it is empty during feeding but she just drops it. So thanks for the tip and I might try giving it to her during her playtime on the mat as well and see if this helps.

Hello it is a good few months since I started this thread so I was amazed to see that it came to life a little later. I started a new thread a couple of days ago on special needs 'ng tube had to go back in' if anyone is interested which kind of sums up where Alex has got on to.
Meganmum what you are saying is just like Alex is, for months he was fine to drink bits of milk orally and then one day he just stopped. To date the haberman bottle is the best for getting him to drink from, but some days he just does not want it in his mouth. we have lost the plot a bit with getting him to drink, and especially when we tried him without ng tube, we literally had a few cups/bottles on the table and let him to choose which one to drink from when eating solids. he kept switching and was quite amused by it. but now the ng tube is back in he does not seem to want to drink any liquids. It was a battle to get him to eat solids too, we tried on and off since he was 4 months and in the end established regular feeding when he was about 6-7 months. the trick was to find something he liked - it took ages. it was parsnip in the end (with baby rice and his milk) and then he got to like potato with leek of all things. he hated anything sweet. now he is heavily into fruit purees mixed with baby rice and his milk. unfortunately whilst we were on holiday he got a taste for bought things (organic Ella's kitchen pouches) and now refuses to eat our home made food! but as far as I am concerned it is food and great if he eats it. another great tip from SALT was to get him to sit with us when we eat our dinners and give him food at the same time to play with and generally let him be close to our food and put his fingers into it if he fancies. We were also given a very good brochure from GOSH about weaning children off ng tube which i will scan and attach next time I get a chance.