I have no idea how I went from my happy 3 week old baby who suckled at the breast (somewhat poorly) to my now 15 weeker who after a week in hospital is home with an NG tube.

I've gone from getting out the rouge boogies, to aspirating his stomach contents and testing them on the litmus. It's been such an overwhelming process and now that I'm home I feel helpless.

He has no appetite so I top-up whatever he doesn't take with a gravity feed but now he's had the big feeds he's not at all hungry enough to take his little oral feed so it's all going down the tube (literally and figuratively).

I just want to go back to the beginning where it was breastfeeding problems and the boogies, I can handle that, I can cope with that.

Anyone with a story to tell please tell it here, tell it to me. Tell me how you coped and what happened and how you got through it.

Please & Thanks.

CourtandRuby,

Huge hugs!

None of this is easy and it especially can turn to custard with a prem - I do understand.

First off let me tell you we've just celebrated 2 years of being a reflux-free household on the 1st of December! That was when, two years ago, my eldest had his reflux surgery aged 11 1/2 and we finally saw the end of it all.
You CAN get there too!

Thomas, my littlest had a stint of ng tube feeding too. He was around 12 weeks old when he spent 2 weeks in hospital and finally came home with an NG. It is a daunting process - and hard work taking them out of the house with a tube in place I know.
In Thomas' case he didn't totally stop oral feeding though - but was much more comfortable after tube feeds than oral feeds so I'd alternate and especially at night I'd just let him rest and shoot it down the tube.

If I were you I'd be talking to my paed community nurse about a referral to an SLT pronto to try and maintain some oral feeding - even if only a little because those skills, while hard to maintain are a whole heap harder to re-learn.

Thomas used an Ng tube for around 3 weeks and then, due to medical mis-management, it was removed, they insisted on massive feeds he couldn't handle and started projectile vomiting and vomiting blood. We got him back to our usual paed and we just struggled on for the next few years from there.
Sorry but once you get those kinds of aversions it is really hard. Thomas had got so bad, when he finally had his reflux surgery aged nearly 4, had a gastrostomy tube inserted so we could supplement feeds that way. It's much nicer for the child not to have an NG down their throat and NGs long term can add to the aversion and add to the reflux.
But Thomas was well on the way to weaning off the tube until he got hit with a rare complication which sent us way backwards but he's making good progress again aged 6 1/2.

But we always had plans on how we were going to work towards getting him off the tube from the moment they put it in and someone should have worked out a plan for your little one too.

Seriously - tube feeding and feeding issues are incredibly hard work but somehow you do just get there in the end.

I keep a blog - www.lifewithpremkids.blogspot.com which will give you an idea of our path.

Hope that all makes a bit of sense - here in Welly we had a quake while I was writing and sort of lost the thread a little!!

I would want to leave too. I feel like that as well but I definitely don't have the things to deal with that you do.
Stay on the forum it is a great chance to get those feelings out there and there are heaps of very helpful kind people out there like Eleanor above.
I read your blog Eleanor or at least the last few posts and I left you a message.
Hang in there CourtandRuby.
I knew it wouldn't be easy being a parent. I really was prepared for hell for a year. However I had never come across reflux. It has put us off having any more children. We really wanted 4. We almost didn't have the last one due to reflux with the second.

A friend of mine said about 2 weeks after having her first baby.
"You know Amy, if I had known it was going to be this hard I may not have done it" Her baby was an angel...!

It is hard for me and you have it harder.
Do whatever you can to make it easier and be happy about the smallest wins. I am ecstatic when my son inadvertently eats something green without knowing and therefore doesn't gag it up.
Ignore all non important crap and well meaning advise (even mine if you like)
Take each day at a time as sometimes it really gets you pissed off or upset at the long term.
Look back in 6 months and see improvements in your situation. I am sure there will be some.
God I sound like an annoying idiot but I am crap with words.

Hello reading this i am just blowen away, my lil girl was born 5wks early and she was born on August 10th 2011 and she has severe reflux and allergy to cows milk protein and lactose, we have had many stays at hospital and she has a nasal tube but she was once breastfeeding also, its like we have identical stories, happy to chat as it feels quite hard sometimes.

I have learnt to love the tube it was getting me down but now I think positive, its easy to do, fills them up and man its making my girl grow, she got so ill before they worked out what was wrong she lost weight right down to 1.7kg or 3lb 12oz now she is 4.5kg healthy nearly 4mth old, so happy and sleeping so great now and thats all happened in last 6-8wks. Lexy is not even allowed to try a bottle yet its all down the tube.

I was down and sad and felt alone but its only a stage and we will get thru it, its ben hard with being away from my other 4kids as they are all young oldest being 6yrs but now she healthy we only go for day visits to hospital so its great

My lil girl has just started smiling now too as before she screamed all day and night that she never had a chance to smile and man those smiles melt my heart, the other kids first smiles were amamzing but these smiles are just different cause of what we have been thru.

I see your daughter has alot of allergies too so prob was on neocate to but just incase you didnt know as I have been told they just telling mothers that you cannot shake neocate as it makes it more bitter you just lightly mix and golden syrup in it too just incase he not drinking much cause it tastes so awful. sorry for novel lol

Eleanor you are so right, the oral feeding has vanished with him now as he's not starving due to the ng tube feeding and now has no interest in taking the Neocate.

This has been reinforced with us as he yanked out his tube this morning and it won't go back in until tomorrow. Straight away he was putting his hands in his mouth and sucking on his toys. Haven't seen him do that since it went in. We are with a community Slt now but I don't think we'll see her until the end of the week. We did see her in the hospital but she didn't know what to say, he was really refusing and she was more concerned with the mechanics of it. She said he has a definate aversion to it so I will ask her to help me more with maintaining the feeding rather than the why of the lack of intake.

amyNona, you aren't crap with words at all. You are so right about taking the achievements as they come and remembering to look back later on and see how far you've cone. Often it's so easy to forget how bad it was and seeing the steps makes you realise how good it is now.

Mumto5kiddies, what fantastic steps your wee one has made. Even with the crying that begins upon sight of the bottle he will stop and give me the hugest grin and I am treasuring those moments. That is interesting what you say about the neocate. I've tried everything to flavor that and elecare but he won't take it. I actually think that that might be the problem. This afternoon because he had no tube he hadn't taken much at all, I gave him a little soy formula to try to keep him hydrated. I remembered the dietician telling me with our DD that soy isn't ok for fulltime feeding but I thought I'd just try. He drunk 100 mls and then 4 hours later took 140! I don't really know what to say or do now!

I'm nervous he might be allergic like our DD and if I give it to him then it's going to introduce another issue, which is what the doctors always tell me off for doing. But on the other hand it must be the taste? I re tried flavoring the others again but to no avail.

A while ago our private dietician gave me a sample tin of vanilla elecare, even though it's for over ones. Maybe she didn't realise? Anyway, he drunk that way back when, only when i asked the hospital dietician about it she said no can do :-( Isn't that better than an ng tube though?

What I have learnt over the weekend is that he was only taking the tiny amounts because he was starving and he hated the taste so took no more than required. Now with the tube (or at last until it came out), he is being fed without tasting it so when he's due for his next feed he isn't starving so refuses the bottle completely. After two feeds this catches up on itself and becomes a real catch 22, how do you balance that? Oh, and raise a 2 year old who's home fulltime!

Anyway, sorry for the long post. I'm going to write it all down so when whoever calls from the hospital tomorrow I can clearly explain why I feel so confused.

I also wondered if anyone's had any experience with motility or appetite drugs?

DS is on Domperidone and has been for 2 weeks but it isn't making much of a difference. I read about a drug called periactin. Has anyone tried this? I'd be keen to hear anyone's experiences with it.

courtandruby - Domperidone can take a while to make a difference - bit like the losec so maybe a good couple of weeks because it can make them more uncomfortable to start with until their system settles.

As for periactin - where have you heard about it?
Nicholas is my non-eater, Thomas is making wonderful strides despite the gastrostomy, and the paed tried to get it a good couple of years ago for him. My pharmacy said they couldn't get it any more so she rang the NZ importers who said it was being discontinued worldwide. But I still see kids in the US being started on it on my feeding related groups...

But motility drugs plus omeprazole were the only way to get any kind of handle on my boys' reflux so could def help. We knew when William was outgrowing his cisapride dose because his apnoeas would return...

As for flavouring the neocate Thomas, even aged 6, won't drink it straight. I flavour it with enough vanilla essence to turn it slightly brown and he'll drink it that way. Maybe worth a try??

The fact that he started mouthing things as soon as the tube was out was a really good thing - shows the oral thing is probably much more a pain thing than a 'I hate anything near my mouth' sensory thing and so much easier to manage so do make sure you mention that to the SLT.

Progress will come eventually!

CourtandRuby that sounds positive. Definitely tell the doctors about the soy and the vanilla Neocate. I personally don't think Neocate is that bad. Do you know not to shake the bottle vigorously? It bruises the amino acids and alters the flavour.
Has Pepti Junior been tried? It isn't meant to taste so bad.

Hi CourtandRuby
Both of mine have been on Pepti Junior / Neocate / Neocate Advance, they did not like the taste at first but it did not take long until they get use to the taste, you just need to keep offering it. DS is now 4 when he was 11 months old he had gone from the 50% to below the 3rd% and could not tolerate solids. We were admitted and he was threatened with NG tube but my private paed had told me to refuse it and keep trailing different formula until we found one that worked, it was hard work and at times I wish that we had of had one (NG) it would have made the demand/force feeding easier, my son now has aversions to food, so I just give him what he will eat and them make up the difference with Neocate Advance. I try new thing every so often and see how it goes, I am much more relaxed about things now that he is not fading away. I found getting stress out about it did not help him or me so we just plodded along and now he is doing really well for him.
That first year can be so hard but it sounds like you have got good hospital support and having the SLT will be beneficial. Hang in there take it easy on yourself and accept all offers of help that you get, you don't get any medals for being super mum you only black bags under your eyes LOL.
It sound like you are doing a great job hopefully things will settle down soon and you will get some big smiles from your wee man.

Re Periactin (Cyproheptadine)

It is available in NZ and is not being discontinued worldwide. It is harder to get than it used to be, as it is used 'off label' for the side effect of increased appetite (many drugs are used off label) and new generation anti-histamines without this side effect are now available/preferred.

Our Paed at the hospital advised me to call around the major hospital pharmacies to get hold of it and the first i tried - Wellington Hospital Pharmacy, has it in stock permanantly. They import it from the UK and will sell it to your local retail pharmacy, then you just take your script in.

I pay around $80-100 for a 3 month supply including the courier fee. Your hosp Paed can also apply for a 'Hospital Exceptional Circumstances' prescription to have it funded if they can provide evidence that it works. We are the the process of having this done for both my kids.

After seeing how well it worked for my baby, the Paed said she was going to look at prescribing it for a couple of her other patients with feeding issues!

Hi there, how is the feeding going now? When I tube feed Lexy they told me to use a dummy so she is sucking while her tummy is filling and I always put it in the milk so she gets to taste it also and with her reflux so bad she def gets to taste it then too. I went to hospital appointments today seeing her Pead, speech therapy and dietition and I still am not allowed to try feed her, they want to wait till new year and send us to mother craft and see if we can get her feeding, have you got a feeding clinic round you to help?

My ds was put on periactin at 12 mnths as he would not eat any solids at all. It helped but as soon as I stopped he would stop eating again. So he was on it for a while to stimulate his appetite. He is great now, but fussy with textures etc which I put down to his delayed eating.

Hang in there both of you , it
must be so tough. I have no other advice sorry.

An update :-)

I saught out Periactin, the difference after the first dose was amazing! He started it last Tuesday and at the ward review on Friday the tube came out with a whopping 120 gram gain! Of course they threaten to put it back if he doesn't put weight on again but judging by the bottles that won't be a problem.

The hospital team didn't know about the drug so I did have to go to a different doctor but they are so blowen away by the results they are keen to look at trying out with others. It is probably still a band-aid to the problem, but with no one keen to look at what the problem might be until he's established on solids what else can we do?

The doctors suggested dropping the domperidone which I did on Friday and he's been terrible since Sunday. He's getting a sore tummy and not pooping very frequently. I think I'm going to re introduce the Dom and see if that helps.

The other thing I will try is giving him smaller bottles of 120 mls, not the 160 the dietician told us he could handle.

Ugh he's been grizzling all day, grrrrr. And he's started up again, better run... I'll let you all know how the re introduction of Dom goes!

Thanks for all your support x

Re no one keen to look at the problem until solids....

My 4 year old was prescribed Periactin at 1 year old well after starting solids and still has major food issues. He is on an eating behaviour modification programme and we have attended a couple of feeding courses at the hospital where he has a 'therapeutic meal' with other kids with food aversions etc. He has come a long way but meals are still a daily battle with him.

On the other hand my 10mth old was started on Periactin at 4 mths prior to solids and he doesn't have any of the negative behaviours around food (he did with bottles) and we are amazed watching him feed himself finger foods, eat a range of textures, tries new foods etc

So hopefully the fact that you will be starting solids 'in a good place' without bottle/food refusal being too much of an issue due to the Periactin, your baby won't develop negative associations/behaviours with food.

I am so pleased it's worked for you too. Just keep in mind it can 'wear off' and then you need to cycle it, although this can take months to happen.

Hi

I wouldn't worry too much about decreasing the size of the bottles currently. Domperidone speeds up gut motiliy including emptying of the stomach so he may be able to handle those volumes once this is working again.

Great news about the Periactin.