Here goes..

[Evasmum12]

Hi everyone, not entirely sure I am posting in the right place, but here goes (sorry if it's long and rambling) :

My Daughter is 2 and a half, she is an ex - prem born at 28 weeks. She was in hospital for 3 months, had suspected NEC, small brain bleed, suspected hydrocephalus and poor weight gain, but overall she was a relativley healthy prem baby (if there is such a thing!)

The only real issues I had over the first 18 months was getting her to eat, but I will come back to that.

Then in November last year she came down with a cough and cold, and it just didn't go away. I took her into A&E on boxing day and was given an inhaler. She improved slightly but the cough carried on. By January I was taking her to the Drs at least once a week and being told she just had a common cold. Eventually at the begining of Feb, she was taken into hospital with Pnumonia in both lungs. She was admitted for over a month and was extremely poorly. As a result of how ill she was, she stopped eating completely and we started NG feeding her Frebrini. She came out of hospital at the end of March and was re-admitted several times for infections. Over the last 8 months she has had chest infections, ear infections, tonsillitus, hyperthermia, rigors etc. Between March-May she was vomitting the NG tube out daily along with thick mucus from her stomach and lungs. She has been tested for CF twice, both times negative.
In the last few weeks her health has improved and I am starting the process of trying to get her to eat again, she will drink the Frebrini energy, but only as and when she decides, and she is completely uninterested in food. Officially she has a 'Severe Food Aversion'. She is on the waiting list for a gastrostomy but I am trying to avoid that if possible.

I know it's a long shot but has anyone been through anything similar? Not sure what I am hoping for but the last 8 months have been exhausting, the Drs, nurses, dietiticans, speech and language, consultants etc have worn me out with thier official answers and a million different ways of saying 'we don't actually know what's wrong' and I would really appreciate any replys from a parents point of view!!

Thanks for reading
Helen :)

DS2 has food issues, but his are more of the ASD/sensory variety. I have no experience with the particular problems your DD is having, but just wanted to take time to welcome you to the board. I hope that things start to improve soon for you both. "Not knowing" what is wrong is so frustrating - at least when you know what's causing it, you can start working to fix it.

I'm sure someone with some experience in this will be along shortly.

Not the same background at all, but DS3 has feeding issues. He is now nearly 5 and never weaned onto solids. From lots of investigation - now at GOSH, they suspect that he was eating foods that he was intolerant to that caused swelling to the point that swallowing was at first impossible - hence the gagging - and now an automatic response that he will have to 'grow' out of. But they don't really know.
Its a real drip drip process to introduce texture and different foods. I once remember some dr telling me that he might eat normally in 1 year or 12 years or always have issues. Well that was really helpful! .
He struggles to put on weight and grow. He is monitored every 4 months.
No answers except to say that it could be a long road, and not to stress overly on it. It is very hard to remain calm when all you want is for them to have a go, but it must be stressful to feel like you're being force fed something that you detest or hurts you physically or emotionally.
No advice, just empathy.

Evasmum - yes!!! We have, DS has severe hydrocephalus and developed a compete food aversion after being NG fed for "failing to thrive".

We went through everything you say and more. We were also anti gastrostomy; seeing it as mire surgery (when he had had plenty already) and as not really addressing the issue. But imagine - your Mum (or Dad) who you love most in the whole world having to pin you down at least once a day to ram a nasty tube up your nose....... that's what swung it for us in the end.

So that was when ds was 3 - he's 14 next week. Eating did eventually happen, and drinking was later although he still wont take enough and still has his g-tube.

One thing I remember was meeting with other Mums where their child had had a gastrostomy. Every one of them said they wished they had agreed to having it done sooner - I didn't believe them until ds had his.......

Thanks for replying :) and I agree, the NG is awful when it won't stay in, plus dd was saying 'put it in the tube' when offered food or drink. The Drs havn't come up with any medical reason why she can't eat she just WON'T, and it is soo frustrating. She will attempt 'easy' stuff like yoghurt, soup etc but anything she has to chew she refuses after the first bite. I think it stems from being NG fed from birth, it took a long time to wean her onto milk and I think she still associates milk or liquid with hunger, not food.
The best her dietitian came up with was 'have you tried giving her food she likes?' Hmm Nope never thought of that!!

I'm also worried that this winter will be a repeat of last year, it was awful for her, she barely left her bed or the sofa for 6 months and eating food was out of the question by then :(

(it was about the only thing that one ever did)One of DS's SALTS gave us a leaflet and the one useful thing I took from it is that it really isn't the child being awkward and refusing to eat or drink. As you know the NG tube goes down the back of the throat and eating might be uncomfortable for her, or that she remembers the feeling of having the tube passed.

One suggestion we got (from a different SALT) was to smear food on his lips - do not EVER try that........it set us back months if not years.

In the end we sort of gave up - ds sat with us while we ate; he'd even cook with me but not eat it !! We left it up to him as to whether he wanted to have anything - we didn't try to tempt him, or cajole him. He was just there when food was on the table and had to sit and chat with us (no toys allowed). One day he started taking a little food - cue a few months of a one food diet (tinned tomatoes) until the day he demanded a sausage!!

That's what I do now, I offer her 3 meals a day and snacks in between, if she won't eat it, it goes in the bin. But I've tried pretty much every kind of reward or bribe I can think of to get her to eat and now I've sort of accepted that she just isn't interested whatsoever.

The worst thing is, I knew there was a problem when she was 8 months old, after attempting to wean her onto baby rice/puree for 2 months I went to her HV and was told to keep trying. I went back to the Drs, and spoke to people at the weighing clinic,went to the HV 8 times and again was told 'she must be eating ok because she isn't losing weight' the reason she wasn't losing weight was because I spend 90% of the day sitting with her and trying her with food, and she was still drinking about 2 pints of milk a day, and sleeping 13 hours at night and 2/3 hour naps in the day. All any of the health professionals cared about was the line on the weight graph. (She is on the 2nd centile - just.)

Then after the hospital stay in Feb I have been overwhelmed with HV's, dietitians, S&L therapists, consultants etc, asking ME why I didn't have her reffered earlier!!

The best she ever got to was last autumn, when she lived on 1/2 a wheetabix, soup for lunch and tea, and a pot of custard for supper + 3/4 bottles of milk a day. But now she refuses even her 'favorite' foods, chocolate yoghurt etc.

I have a friend whose DD had various heart problems as a baby which resulted in major surgery. As a result of this, she missed the 'window of opportuity' for weaning and ended up with a gastrostomy. I am pleased to say that by the age of 4 she had actually started to eat sufficiently to have the tube removed. As i recall there was much unhelpful advise dished out by the professionals!!!
My own DD had an NG tube for 5 months (for different reasons) and she really did struggle to eat whilst it was in. She now has a gastrostomy and as you have been told by others, we wished we had done it sooner!!! Our daughter has severe cognitive impairment and will never eat orally again, but maybe if you take the pressure off your DD by letting her be fed through a G tube, but continue to include her in mealtimes, she will eventually start to copy what others are doing. It will not be the end of the world is she has to start nursery/school whilst being tube fed - she won't be the first, and they will just have to deal with it

Sorry, just re-read my original post, didn't make it clear, we took the NG tube out 2 weeks ago because the infections have stopped and she is drinking the Frebrini orally.. I won't go back to NG feeding, if she stops drinking the frebrini she will almost certainly have to have the gasrostomy, hoping I can establish a good enough routine before the winter bugs start again so we don't have to!

Also, how accommodating are nursery/schools? Dd is at nursery now but only half days so I used to just NG feed her before and after

Some nurseries/pre-schools/schools are good - some woeful. You will need to check carefully, ask lots of questions.
DS3 has been [thankfully] to 2 good places where they took the time to understand his limitations with food and work around it. Although, DS1 in the same school, and this year they have not worked well around it.
On the whole I have found early years better at accommodating than Key stage ages.

Helen - I've only read your OP as it's bath time here..... (my profile has lots of info on DS which may explain more ) sorry.

Nemo is 3 and has had an NG his whole life. He was in Neonates for three weeks (from term) which was completely unexpected as we had no clue that he had Complex Special Needs, plus a life threatening heart condition prior to his birth.

He's gone from syringe feeding via the tube, to Kangaroo gravity feeds to pump feeds. 'They' tried/try to get us to agree to a gastrostomy many, many times and each time I say no. Not just to piss them off but he and I both manage his NG just fine. I pass a new tube once a month/six weekly and change his teddies (Tegaderm and Duoderm) every few days.

He has episodes of severe reflux and at times, vomits his tube up but because of how I tape it to his face, means I can just push it back in IYSWIM. He's never eaten anything 'solid' and can't/doesn't chew anything, but will lick foods and takes soup, chocolate (melts in his mouth), mousses, ice-creams etc, quite happily if he's in the right frame of mind. He loves strong flavoured foods, curry, pizza, garlic bread and the like.

The one thing I remember more than anything was the pressure from ThePowersThatBe to get him to eat. I was told at 17 weeks to wean him. He has Sensory Feeding Disorder FFS, which 'they' finally decided after days of tears and tantrums from both me and him . Anyway, he's on Nutricia Fortini and will also drink that out of a small cap used for his feeding pump.

How would you feel about an NG for a temporary period until you can get her eating enough to sustain a good weight? The cleft team at Manchester Children's Hospital suggested we 'starve' Nemo to see if that made him eat.

Mwahahahahahahahahahahahaaaaaaaaaaaaa....... sorry, that's the reaction I gave them. I think a degree of 'starvation' is different to the methods trialled in parts of Europe and has worked on some children with Sensory Feeding Disorder but not Nemo.

We tried dropping the amounts of feed he had via the pump and it made no difference what so ever. He grazes you see, all day long. He asks for food (in his own way as he can't talk properly) and will sit licking it.

What is her favourite food? Have you tried offering that and if so, will she eat it with no fuss or drama? If she does, then it's 'behavioural' and not 'medical' IYSWIM. Sorry this is so long......

Does she eat anything now? How much? How often? Do you still give her the liquid feed to drink? What happens at meal times? Does she sit with you? Help you cook? Have what you have, even spicy stuff?

Questions galore I know but I really feel for you. I really do.

If you don't want her to have a gastrostomy, then say no. I refused with the understanding that if he doesn't eat/eat more in 6 months, we'd consider it again.

Do you feel pressured?

We've gone back to basics with Nemo and I am completely lead by him. Each day, he takes another tiny step forward and I am more than happy with that and let's face it, it's US who are doing this 24/7, not them!

Hi mouseface, apart from the Sensory Feeding Disorder - what is that, if you don't mind me asking? - Eva sounds quite similar to Nemo, she can and will 'eat' food (i.e one mouthful, not meals), and she will agree to taste most things, I try to give her a range of foods, spicy, sweet, different textures, finger fods etc etc and there is very little difference in her reaction - on a good day I can get her to try things, maybe 2 or 3 mouthfuls before she starts to refuse, then maybe 2 or 3 more with encouragement/ bribery ha. On a bad day even mentioning food has her upset and refusing, even if I'm not even talking to her or if I'm cooking for myself.

As you will know yourself, after 2 years I have tried every possible way of feeding her, when, where, who with etc and nothing works consistently.. she dosen't have a favorite food really, I can get her to eat yoghurt, custard, soup more often than anything else but I think that's down to not wanting to chew food rather than the taste.

Restaurants are a nightmare, she will sit and sob hysterically when offered food. She never asks for food or appears hungry, although she must be. She will happily sleep on an empty stomach but asks for more drinks when I know she must actually be hungry.

She was NG fed from Feb to end of June while she regained the weight she lost in hospital, but even then she didn't pile weight on as you would expect, because she was vomitting the feeds and the tube almost daily (since she started drinking the frebrini she hasn't been sick once). She drinks about 500ml frebrini a day, on a good day. She has maintained her weight since the tube came out and I try her with food about 4/5 times a day, when I know she isn't tired or full of frebrini, sometimes just a piece of orange or ham, sometimes a meal.

I'll try to wrap this up now lol.. there doesn't seem to be any reasoning behind when she will or won't eat, its not consistent, she dosent have a good time of day, she never ever eats anything I would consider a meal.. the most amountof food she will eat in one go is about what you get in a small kids yoghurt.

Hope I've made sense and not rambled too much!