Tube fed baby and feeding aversion

[Pjsallday06]

Hi,
My baby is almost 9 months, we had problems with feeding since she was born. She is tube fed for the past 5 months because she wasn't gaining weight and refusing bottle. She stopped eating completely now, refusing solids too. Doctors say it's feeding aversion & reflux and there is no other medical condition they suspect. They haven't done any tests at all. Just looking at her and said feeding aversion and reflux, that's it.
She is also twitching a lot, seen GP and he said it's because of reflux again...
Did anyone have or had a similar issue?
Please share any advice and share your stories if you can xx

My daughter had feeding aversion due to reflux and food allergies.
She some how gained weight beautifully despite at times only breastfeeding for 1 minute or 2 during the day with the average feeding being 10seconds long but maybe 10-15 minutes overnight when calmer.

She didn't engage with weaning until 13 months which is only of the few times we l had real issues with her weight and she only gained 200g between 7 and 13 months dropping a percentile.

We didn't reach symptom free with the allergies until 15 months and her reflux goes on and out of being managed even though she is 3.5 it's still struggles with her reflux. For us we get ok management of her reflux with high dose omperazole, gaviscon in any drinks after lunch and domperidone.

Thank you so much for sharing x was she constantly crying and straining too? I just feel so helpless. She is crying every time I put her in feeding position or high chair, she behaves like I'm trying to poison her :(
She is vomiting 3 times a day, sometimes even after 2h after the feed, not shortly after the feed. Refusing to take anything to her mouth. We have tried Omperazole but every time we give it to her she is vomiting even though it's on empty stomach, when we repeat the dose it's exactly the same.

How did you start the weaning? Did you see the time when she was ready or just trying for months and months until she started eating? X

Have you come across Rowena Bennett? She is pretty much the authority on feeding aversions & she has a couple of books on Amazon as well as her website below.

From what I remember reading, bottle aversions often lead to weaning and feeding aversions but she has lots of advice on how to overcome it.

https://www.babycareadvice.com/pages/about

We started weaning at 24 weeks but she didn't take a single bite until 27 weeks.

At this point I was breastfeeding and still identifying allergens in my diet as well as some things that she could sort of tolerate through me but not directly. It was very up and down. If she was ok and not too refluxy she might have a 10-20g portion of spinach and sweet potato. It had to have spinach in it otherwise she wouldn't eat it. We had some big set backs after a reaction to me eating beef and a gp prescribing a formula she was allergic too at 8 months. This was when she really reduced what she would it but did start to engage with baby led weaning. There were two days where she ate well. One. She ate 1/3 of a cucumber as one piece and it took her all day. Another day she ate half an apple as one piece. I had severe pnd and needed to stop breastfeeding but the reaction to formula gave her a bad bottle aversion at home she did take a few Oz at nursery over the day. I went into hospital and the staff there tried to help with the weaning to see if she could sustain herself without breast milk or formula. There was no chance of this happening if a good day was half an apple! The staff were unable to get her to eat. At this point she probably had 1 or 2 spoons of Weetabix in the morning a handful of peas or sweetcorn for lunch or dinner. A sachet of food could do 4 meals over 2 days then be binned with half of it still there! I had to send her home to dad to try and get her on formula and thankfully after 26h of no liquids she accepted a bottle and we didn't look back. At this point she was having a reaction twice a week but between my diet and the small amount she ate it was hard to pin point the causes as her reactions occurred 30 minutes to 3 days after the exposure. At 12 months she went to nursery full time and I was discharged from the hospital. She was starting to thrive on the formula and we started to identify the last of her allergies - onions and garlic. Once we took those out of her diet she started to eat more. She still has her moment and over the summer this year we had 3 months where she had half her breakfast and one lunch or dinner every 2 days. We end up with a fridge of rejected food ready to try as back ups the next day. Her reflux goes in and out of being adequately managed and she does still go off her food when her reflux is bad. My mum also has severe reflux and she is on a really limited diet due to it too.

We had that with the omperazole when she was little and still a regular refluxer. She is mostly a silent reflux. She was often sick 5-8 times a feed. Once we got on a good pattern with the omperazole the sickness stopped and it was then easier to get the omperazole in her. For a while is did half a tablet prep and gave that and then the second half 30 minutes (made fresh). The odds were she would keep one of the two down. The real game changer with her reflux was starting on domperidone. It increases the speed that the stomach empties to the milk isn't there for as long. It made a big difference but we only got this prescribed after seeing a private consultant. Our NHS paediatricians agree to prescribe it after we saw a benefit. Our consultant thinks my daughter has regurgitation syndrome too learnt from refluxing for so long.

My mum has been a big supporter in this. My eldest sister was fft after she went on formula when my mum had a stroke. She projectile vomited every feed until she turned 2. she had hospital admissions for not gaining weight and being below the 0.4th line. My mum had to wean her at 3 months just try to get some calories in her. I think she probably had cmpa as she reacted to dairy and as an adult until she went vegan. Overnight it all stopped at 2 and jumped to the 50th percentile and it's around this age that most children start to out grow allergies

My 9 month old is tube fed and has oral aversion. He has a diagnosed condition though. Weaning to solids is proving really difficult, he spits food out and just doesnt want to eat. He prefera finger food rather than me putting food in his mouth (the oral aversion). Very very very slight improvement, we're trying making his hungrier and lots of messy play. Little things I've found to help are after food is in moutb holding the chin up slightly to encourage food to stay in mouth and youtube video of other babies eating at a highchair. We manage a couple of bites at best and im sooo worried!

Yes, I got her book and reading it whenever I can x I looked at consultations too but so expensive x

My friends baby was tube fed from birth, and could only eat after an operation when older.
She then had no swallow reflex and so would not eat.
She continued to be tube fed, but they offered her all sorts of foods. She would play with them, sometime lick them, sometimes put them in her mouth and then spit out.

They continued to offer food and tube feed together and it took weeks and weeks. Then one day she was playing with some cheesy whatsits (good because melt in the mouth) and the swallowed some. From then she very very slowly started to actually eat things.

Even after her op she had horrendous reflux and was often sick. She continued to have a % of her food by tube for years.

Looking back, I guess huge amounts of patience, allow her to go at her own pace, and most of all, get some support from other mums going through it because no-one else really gets it.

Thank you so much for sharing your story x Really appreciate it!
You went through so much! I didn't realise how bad reflux can be, the doctors say she should be ok by 18 months but when we struggle each day it's really hard to see the light at the end of the tunnel.
We have no cases of reflux in my family, neither my partner's family so this is very difficult for us to understand how baby can just refuse to eat.
Maybe we are just looking for something that isn't there - we were just hoping we can find something and resolve it as fast as we can so we can live normal life and enjoy the time with her.

It's far from normal now, we have four bedrooms and I sleep on the sofa in the living room with her. We have tried to go to the bedroom to sleep but always ended up with her being sick in bed or on the way to the bedroom. She is crying so much around the feeding time, whenever she is sick she is just becoming a different baby - very happy, playful and smiling - until the next feed.

We also spotted she is twitching/ spasms more and more, GP said it could be because she is in pain from reflux and that's her reaction to pain.
Did you come across that with your daughter too? X

Thanks again for sharing your experience, it's really helpful ❤️ x

You have to sleep how they will sleep sometimes. My mum was just telling me yesterday how they put a bouncer chair in my sisters cot when she was admitted for refeeding in the hope it would stop her being sick in the night. I'm not recommending it but if these are the sort of things medical staff jump too (well in the 80s) give your self some slack about what you do at home.

My daughter was so much better if we didn't move her at all after a feed. As soon as I moved her upright she was sick. Due to this there was a period of time where I only fed her lying down and left her there. I had the mattress from the travel cot under the sofa and I breastfeed her on the floor. This was the only way I could get her to feed for more than a few seconds during the day emulating the lying down cuddle feeds whilst cosleeping at night. We started to use a pillow in her cot at 10 months under drs advice as we all needed more sleep

I've not noticed squirming as such but lots of back arching and trying to escape my arms. She was so strong as a baby!

Just 5% of children or children who had reflux (I can't remember exactly) still have reflux at 2 so the vast majority of children outgrow it between 1 and 2. My daughter is one of the 5% unfortunately or even lower as she's now 3.5. We have just added a gastro specialist to our medical team who has massive increased my daughter meds. Our regular one was only comfortable prescribing the max omperazole for her weight where as the gastro has done max for her age

friends baby had to sleep upright.
She couldn't lie down at all really.

She had not just reflux but a problem with her oesophagus, so very severe, which is why she was tube fed for months.

They had her in a special chair which was basically an upright car seat. It was the only way anyone got any sleep.

Do you mind yo share what condition he was diagnosed with?

For us there is no improvement. She has now full bottle aversion and won't take anything anymore.
She is crying when she sees the bottle or when we put her in the highchair.
I don't feel like we get enough support from the SALT team, neither Pediatrician. We do messy plays for the past 3 months,three times a day and no improvement . Feeding is getting worse and worse. She is not happy being fed through the tube either, moves, strains and cry.
I just feel like this is never ending and I'm just worried she will be tube fed for years.

Hi there,

My daughter is 7.5 months now and has been suffering with bad reflux since she was a month old. She's been tube fed almost exclusively since then, as she developed an oral aversion to the bottle, and suffered from aspiration pneumonia when she was around 2 months old.

We've recently started weaning, and it's not been going smoothly. Very disinterested in food in general, only having a couple licks, and if the puree isn't smooth enough she will gag and vomit. I've been finding it mentally draining, and been having a few more down days recently. She's on 7 feeds a day, 90mls neocate, but it's not making any difference. She is still vomiting at least 6 of the 7 feeds, and until she vomits she is screaming in pain and I feel awful feeding her, I genuinely feel like I'm force feeding her, and now I think I've also developed anxiety around her feeds.

I've found there's been very little support from any of the care teams (paediatrician, community nurses and SLT). So I came on mumsnet hoping to find another mum who has gone through the same thing.

I came across this post and I am so sorry that you have also gone through this, I don't think anyone really understands what this does to your mental health unless you've experienced it. Has it got any better? And do you feel like you've gotten the help you need now? Any advice would be really welcomed at this point 😢

Hello,

I'm so sorry to hear that you are struggling too x
I
My Daughter is 13 months now and finally eating solids.

Let's go back to February.

Beginning of February she was still vomiting almost every feed and we had no faith this will ever improve. We have been both mentally drained to the point when we thought we could no longer help her. The end of February my daughter stopped vomiting. One day just completely stopped. We couldn't believe this was happening and it was the best thing ever but only lasted a few weeks .. March was good, she didn't have many solids but at least she wasn't vomiting as much and gained a bit of weight. In April we started nursery introduction (I'm nowhere near in the position where I can work but we had to break on how attached she is to me and give me time to cook clean the house etx) and she was constantly coming back with different infections and her reflux came back to what it was in begging of February, she wasn't having any solids, no bottle, no water, absolutely nothing. We have been to A&E 6 times for the past month. Tonselitis, breathing problems, aspiration pneumonia, 4 xrays, 4 different antibiotics, suspected whooping cough, fever on and off for 4 weeks. The nightmare continued. Finally she got a good antibiotic last week and she is much better now, started eating again solids but not much bottle x
We have the feeding schedule we work with Dietitian to do it so it works for us and Dietitian making sure she gets enough calories and we are not pushing too hard too fast. for the past two months has been a lot of changes - reducing the feeds down, trying to make her more hungry for solids and it really works! She is on Neocate junior and soya growing up milk now. We tried about 10 different sippy cups, plenty of different spoons, foods etc.

I have the same anxiety feeding her like you, I cried for months when it was close to feeding her bottle or solids.

I tried to sing, eating with her the same food, showing her how to open the mouth, what really helped was watching cocomelon ( we have been really against baby watching too much TV and every health professional told us not to introduce it ) . She really enjoyed that and every time she laughed I put the spoon in her mouth with food quickly. I highly recommended Organix Melty Carror puffs - that's how we started with her eating and she loves them now still.

We have a meeting this week with health professionals to decide whether she is really not to have the tube for some time as the trial, it really worries us but on the other hand I would rather go through hard time now and see how she will do without it.

Mentally I don't think I will ever be the same. I think everyone disappointed me deeply how they dealt with our situation and how little help and support we got. It was almost like everyone was trying to avoid us and will text time to time how we are doing. The past year our home became our prison, we couldn't leave the house much cause whenever she was sick she was crying and hungry so we had to do a feed tube one after another.

Apologies if my post is a bit chaotic and not sure if it will help you in any way as there is a lot of details I could share with you. Will DM my number and you can WhatsApp me if that's easier! Xx

Lots of love and strength from us xx