Help - 4 year old eating/weight loss

[Butterflies27]

In Jan this year my dd had a tonsillectomy, this resulted in a food aversion. My dd was admitted to hospital and had an NG tube inserted for 4 months as she refused to eat.

The tube was removed in May as she was refused entry to the feeding clinic -as didn’t meet the requirements and as suffering lots of tummy pains which they couldn’t rule out the tube doing.

My dd was 15.3kg on the 11th May the day the tube came out she was 14.8kg. She had, had 2 feeds that day so the weight loss wasn’t due to tube removal.

At last consultant meeting they were fine about her losing some weight -to be expected. She is now 14.7kg weighed yesterday. Since the tube went in, in January we have had no medical help to help my dd overcome this. We’ve been told as my dd doesn’t fit ‘a box’ no medical reason for this they don’t know what to do.

I contacted SALT they assessed her but don’t think it is an oral problem.

My dd is eating but not a lot, which the hospital know but are only going to monitor her, not for 8 weeks now.

I just don’t know what to do/how to help my dd. Is there a specialist that might help. I will go private if i have too but we are in the south and I just can find anyone.

Has anyone gone through similar and come out the other side .

My situation was not the same but similar in effect. My son was weaned off long term tube feeding at 4. He had a mickey button so no tube to come out, but we dropped one feed at a time.

Each time he dropped a feed, he ate very little to replace it and lost a significant amount of weight over about 2 months before his appetite sort of kicked in and he started to feel hungry. He had huge sensory issues with food, as well as reflux and poor gastric motility.

We found giving him mostly what he liked and a tiny bit of something we wanted him to try worked... but very, very slowly. Over months or years really.

Are there textures your daughter likes better? Or tastes? Does she like 'wet' or 'dry' food?

You could try a book called 'just take a bite' here on Amazon

If your daughter is eating something, then that is great. Just try and build on that, very slowly. Very easy to say - it's so worrying.

We are out the other side and my son now eats very well - I am constantly amazed at what he tackles now - though there are still things he won't consider.

Good luck.

Thank you for your comment, it means a lot. Being in this situation with so little support is very isolating as you may have experienced.

I’m glad your son is doing well now, I long for the day I can write something similar.

My dd was always a fussy toddler would never eat cereal but eat most things toddlers eat. She had a lot of antibiotics for chronic chest infections for 2 years and I believe they suppressed her appetite.

Just before her tonsils came out and 3 weeks of antibiotics she just chose on Christmas Day to not eat -it ruined the whole day.

After the op she didn’t eat a thing for 13 days, it was like she had, had a brain injury as she just didn’t remember food or how to eat, it was bizarre.

She was very wary of crumbs but is starting to eat toast and sandwiches. She has a very strong sense of smell and taste and these can affect what she’s eats or will try.

She likes cheese, doesn’t like milk, doesn’t like potatoes -not any kind chips, waffles, mash. She likes chicken, pastry. Probably more dry food but she does like gravy on things.

We are still waiting to be referred to a community team to see if she had high functioning autism. I don’t believe she has this but then consultant thinks her eating is not normal and wants to rule it out.

Your right in that this won’t be a quick fix and will take time. Its so hard though, it’s such a long process. We are 4 weeks off the tube, but not signed off so feel like a big weight still lingering over us.

Oh Butterflies, I really feel for you. I can remember how worrying it was. My son had issues from babyhood - part of a wider condition - and I thought by 4 he would be better, that the tube-feeding would have reset his appetite, so to speak.

It was terrible though. We'd drop a feed of 300 cals and he'd eat one bite of bread and butter between his morning feed and tea time feed. I'd spend the day carrying round bread and cadbury's chocolate fingers in case he wanted to eat. His condition is a growth one really so all the time I'd also worry about the long-term impact on his height. It was desperate and, like you say, alienating. People would say the strangest things, thinking they were being helpful.

It's great she likes chicken, cheese and pastry. I would just keep going, little and often, with the things she likes. Will she eat chocolate or other calorie-rich food? It sounds terrible but really, the calorie supplements they give you for babies are just fat or sugar or both. Calories are as important to her at this stage as nutritious food.

With regard to the wider investigation of her issues, this is a long shot but she didn't have a low birth weight, did she?

Anyhow, sorry, probably not said much more useful. I do feel for you though. I do remember the lack of professional support. Even though my son had 4 different consultants, an OT, a physio, a dietician and a SALT, no-one seemed to be able to give me a knowledgeable steer on how to wean a child off tube-feeding! The book is helpful though - I'd recommend it.

Do ask if there's anything specific you'd like me to answer. Take care of yourself.

To be honest, with this degree of eating problem, they're right to assess for ASD.

You might find it useful to read about ARFID (Avoidant restrictive food intake disorder). Though the frustration is that it's only been recognised pretty recently, so ways to help are limited.

Dear god that's an insensitive post to put on a thread about a child with an eating aversion.