Reflux - all meds stopped working! Can anyone help?

[Lou175]

I just joined Mumsnet today and I'm desperately hoping someone can offer advice.
I had b/g twins who are 9 weeks old. They were born at 33 weeks. My baby girl is suffering with severe reflux and has been for a few weekrg now. She has a history of dusky episodes but has also recently started bringin all her feeds up. After a hospital stay and several dusky episodes she was put on Domperidone and lansoprezole (sorry for spelling). She showed improvement and was discharged but then started with breathing problems again, going dusky and throwing up all her feeds - basically worse than before. She is now also on ranitadene as well as the above. It's doing nothing for her. We tried different milk in case it's dairy related but still no improvement.

Basically, I'm desperate! She's already tiny and needs to gain weight and won't if she continues. Life is pretty difficult as she's still in hospital and separated from her twin. She is likely to be discharged soon, despite all this, because she managed to put on 1oz. This is in spite of the fact feeds are traumatic to say the least and we are allso miserable because she is.

The docs don't kno why the meds aren't controlling it but want to keep her on them anyway. They are only concerned if she loses weight and not the misery and distress that comes with it, not to mention the fear that comes with feeding her in case she goes blue.
Does anyone have any advice? Anything else we could try?
I'm really hoping there's something out there which will work!

Thanks for your reply. Do you mind me asking why you decided to to try goats milk? She's currently on just Infatrini Peptisorb which is high calorie and has the proteins broken down. I'm told this will help if she has dairy intolerance. It hasn't helped. She's come off breast milk as a trial, where she was alternating expressed breast milk with formula before. She was struggling with breast milk too. I'm starting to think it's just an anatomical thing rather than the milk.
They won't operate unless she's losing weight. She may gain slowly as she's on high cal milk but how many more times do I have to watch her struggle to breathe?! It's an impossible situation :-(

Dd was the same, after coming home from hospital as she couldn't keep breastmilk down, she was put on SMA staydown formula which did help a little bit. The noises are scary, a dummy did also help.

The only thing that helped dd was just growing out of it, so sorry

Thanks both of you. The stay down milk has been mentioned by a previous doc, but I'd be cautious to try it as she was terrible on the thickened milk. It came back up and she needed oxygen.
Not sure what they can do to help/stop the blue episodes. Maybe I'm just searching for something which doesn't exist...I'm thinking of seeing a different doc privately just for fresh ideas.

the stay down milk thickens when its in the stomach, so you have to make it with chilled water and use straight away

You poor thing. I think if meds and lacto free milk aren't working I would push hard for them to re-evaluate treatment. I had prem twins and one had reflux badly. Meds just about controlled it but we had to be very militant about pushing the doses up with every weight gain. Comfort milk didn't do much, pepti lacto free milk DID help but it was - and you're not going to want to hear this - only around 6 month plus when he was more uptight and moving onto solids that we really got it sorted.

Twins are hard. Prem twins are harder. And reflux is soul sapp

Sappingly awful. Just keep on at your hospital /consultant - thry may feel now you're home it is not their problem, but if its affecting breathing then it really is. I know how shitty this feels and I wish I could help you.

A very vertical bouncy chair (baby bjorn) worked well for us post feeds as well.

Thanks. That really sums it up - that it's soul sapping. So much energy and stress goes with every feed, not to mention the 13 doses of meds a day, only to see her vomit it all back up.
What was the name of the lacto free milk you were using, if you dont mind me asking?

Sorry, can't add up. It's 11 doses :-(

So sorry that you are going through this!
DS had very bad reflux. He seems to be growing out if it now (at 6 months) but we found that changing his milk helped most. He was put on Nutramigen at 8 weeks. We had tried sma staydown before that and it only made him constipated. Putting something under the cot so that it was at an angle helped a little bit too. But we were at the hospital quite a few times before he got the right medication, so please do insist on the doctors to check your baby again and again if no improvement. Doctors at our hospital tried to convince me that DS is fine and I just don't know how to soothe him!!!!

Hi, I'd ask them to try something called neocate, another high cal hypoallergenic formula, more easily tolerated than peptisorb. Really feel for you , hope things improve ASAP xx

My goodness that sounds really hard start.

DD had reflux from birth and spending ages getting a feed into her, keeping her upright for 30 mins plus after a feed then fountainous vomit anyway, sapping is exactly the right word.

Have they tested your DD for [[http://www.gosh.nhs.uk/medical-conditions/search-for-medical-conditions/pyloric-stenosis/pyloric-stenosis-information/?__utma=1.394646247.1358263629.1358290846.1372628653.3&__utmb=1.3.9.1372628733923&__utmc=1&__utmx=-&__utmz=1.1372628653.3.2.utmcsr=google|utmccn=(organic)|utmcmd=organic|utmctr=pyloric%20stenosis&__utmv=-&__utmk=150606774 plyloric stenosis] ?

If you are anywhere near London/Essex, there is a reflux specialist multidisciplinary team based at Brentwood.

Look your consultant in the eye and point out that since your DD is going dusky/blue you're really worried. Has the consultant observed a feed?

You might want to have a look at Cows' Milk Allergy Support Facebook page and website. They have dedicated forums for reflux and feeding (and parents who are veterans of trying every milk going). Even if you don't feel it is cmpa, you might find their support useful re reflux, mess and milk options.
Either way, I hope you find some answers and some peace soon. It sounds very hard for you. As a mum of 2 boys who have/had reflux, including one with sleep apnoea, I sympathise. Equally, and I'm amazed to be able to say it now, your memories of this will fade.

Hi ladies, my little one has reflux as well as a heart murmur - which is being investigated so not yet sure how serious. He was given renatidine which can affect the heart and so I haven't given it to him. He has been in terrible pain today and I'm am confused and very worried about him!

It seems there are a few of us experiencing this issue.

Hi ladies, my little one has reflux as well as a heart murmur - which is being investigated so not yet sure how serious. He was given renatidine which can affect the heart and so I haven't given it to him. He has been in terrible pain today and I'm am confused and very worried about him!

It seems there are a few of us experiencing this issue.

My DD wasn't prem but was a NICU baby, she also had horrible silent reflux and a cows milk ans soya intolerance. Lactose free wouldn't work for her. Id second trying a different milk and also weaning her onto it gradually, can take a whole for the gut to repair if its aggravated.

I really hope you get answers, sounds like a second opinion would be a good strategy. Do look after yourself too, having a little one in hospital is so exhausting.

Hi Lou
I think we started on SMA prem formulas, two different types, then moved onto Cow & Gate Comfort Milk - all with thickeners, Domperidone & Ranitidine, plus bf (they alwasys had bottle top ups) - there weren't some of the reflux formulas there are now, I think they came ontot he market just a few months after we stopped using Comfort (my two are 20mo).
Then I think we moved DS onto Aptamil Pepti 1, then Aptamil Pepti 2, but it did take quite a while before that was suggested as the solution.

Interestingly when I weaned him we moved him successfully onto Lacto-Free milk (not CMP-free), and he now eats dairy with no problem. But that's all a very long way away for you right now...

We find that cow and gate comfort works best for us, even though its for colic. Dr browns bottles helped, less trapped wind, less reflux for dd.
dd is on omeprazole which was a wonder drug for her, changed overnight and domperidone did nothing. I'd absolutely refuse discharge until you are happy. Are they monitoring her oxygen levels whilst feeding? They did that every feed dd had whilst in hospital, if not then request it.

I'm around if you just want a chat, if you search my username you'll see some absolutely desperate posts from me when dd was five weeks old, literally at wits end, she's now 16 weeks this week and my biggest issue is her refusing naps. Big hugs, it's soul destroying.

Thanks everyone. It means a lot to hear from others who have come out the other side of this.
Well the last 48 hours have been just awful. DD has been deteriorating badly, not helped by the fact she has picked up a virus and has a nasty cough and is full of mucus. Yesterday she threw up every single feed and medication. She also started being violently sick over an hour after feeds, choking on it and at one point went purple. The sickness has been hurting her more and more and she was clearly distressed. I requested to seethe doctor several times and only saw a registrar at tea time who put her back on NG tube feeding. I'm incredibly upset with the nursing staff who, probably because DD has been in here so long now struggling with reflux, just didn't take her worsening symptoms seriously. Completely wrong information was handed over to night staff who were told DD had not wanted to feed all day and we were refusing to feed her. We had persisted in feeding all day, despite her throwing everything up. I'm still upset as I have asked why this happened and been brushed off.

ANYWAY, I truly believe this hospital and the doctors are out of their depth as DD is not a straightforward case. I spoke to Dr Mike Thomson from Sheffield Children's Hosp yesterday and he said we were within our rights to request a transfer there as they have a specialist gastro centre. We are in Halifax so it's not too far.
Does anyone have any experience of Sheffield Childrens hospital?
I hope I'm making the right decision moving her there but I can't watch her go on like this.
It would just be much harder to get home to see DS :-(

Just want to add that they initially monitored her oxygen levels and she desatted regularly, but self recovered most the time. She needed oxygen a couple of times. They brought her off the sats monitor a while ago as they said we wouldn't have it at home. I asked for her to go back on it yesterday due to her stopping breathing while being sick. The doctor agreed but when it didn't appear and I asked, the nurse said she felt it a step backwards. I was and am furious that nurses are overturning decisions like that.
Can you tell that I'm at the end of my tether now?!

Yes, formally complain, that normally gives them a kick that they need, request a formal meeting with her dr and ask for the transfer, if your gut instinct is you are not getting what you need then move, but absolutely do not let them discharge you first, you will only leave when a beds available at Sheffield. They will try no doubt to get you out but just keep saying no, you are not satisfied and feel its dangerous to take dd home. Either do something different or arrange the transfer. Big hugs.

They do something different obviously not you. :)

Yes. Complain

Also get her placed back on a Sats monitor until she is more stable. Nurses have no right to override you and did you request the information be correcyed fiven in her notes on handover?

I'd transfer ASAP. Hope you see improvements once you have a decent yeam supporting you and your DD

I would make a massive fuss to be honest. You sound great - well informed, looking at other options, open minded. I think you are entitled to demand a meeting with a more senior doctor and some proper answers.

I would also request a transfer if the distances are feasible (and I know how hard it is having twins at different places). Is there any chance your DH/DP could go with her to Sheffield? DH stayed with DS for nearly a week when he was transferred and I was still in the birth hospital. It was hard, but worth it in the long run.

Also, if you have a really good expert consultant on her case then it will probably help once she is discharged and you're feeding at home - having someone we could phone up and talk things through made a huge difference to us.

As far as I know - and I could be wrong here - some babies DO come home on sat monitors. But more importantly, babies don't come home when they're still de-satting! That's the whole point of monitoring them, doing the car-seat challenge etc. I would certainly raise that as a major concern.

Thinking of you guys lots and hoping your DD gets some comfort soon.