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Reflux - all meds stopped working! Can anyone help?

(45 Posts)
Lou175 Sat 29-Jun-13 16:47:05

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!

miemohrs Sat 29-Jun-13 16:57:02

Message withdrawn at poster's request.

Lou175 Sat 29-Jun-13 19:50:10

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 :-(

miemohrs Sat 29-Jun-13 20:12:24

Message withdrawn at poster's request.

AnyaKnowIt Sat 29-Jun-13 20:18:13

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 sad

Lou175 Sat 29-Jun-13 21:07:31

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.

AnyaKnowIt Sun 30-Jun-13 12:06:42

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.

Lou175 Sun 30-Jun-13 18:46:38

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?

Lou175 Sun 30-Jun-13 18:48:56

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

Ethlinn Sun 30-Jun-13 18:59:39

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!!!!

idiot55 Sun 30-Jun-13 22:26:16

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

blondieminx Sun 30-Jun-13 22:48:05

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?

SurvivalOfTheUnfittest Sun 30-Jun-13 23:00:45

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.

kloan Sun 30-Jun-13 23:11:31

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.

kloan Sun 30-Jun-13 23:14:22

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.

redwellybluewelly Mon 01-Jul-13 00:17:01

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...

ratbagcatbag Mon 01-Jul-13 13:47:05

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.

Lou175 Tue 02-Jul-13 08:11:29

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 :-(

Lou175 Tue 02-Jul-13 08:47:33

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?!

ratbagcatbag Tue 02-Jul-13 09:46:57

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.

ratbagcatbag Tue 02-Jul-13 09:47:44

They do something different obviously not you. smile

redwellybluewelly Tue 02-Jul-13 10:54:08

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.

One other idea - have you tried talking to Bliss? They may be able to help you work out what's best to do when you're not happy with the SCBU care.

Lou175 Tue 02-Jul-13 12:05:16

Well I've told the doctor all my concerns this morning and also complained about the lack of communication and the fact the nurses just aren't taking DD's condition seriously and they don't take what I say on board as they clearly think I'm just 'going on'.
DD's consultant is now away three weeks so the duty doc is standing in. He clearly thinks the fact I've asked him to speak to Mike Thomson in Sheffield is too much hard work as he pointed out she wasn't his patient. She is for now though! This is his chance and if he doesnt call a complaint will be going in. I think she'd be better off in Sheffield but at least opening a dialogue would be a start.

lotsofcheese Tue 02-Jul-13 12:22:38

Hi Lou, just wanted to give my sympathy. I have an ex-29-weeker who has just outgrown severe reflux age 3.5.

I found our local neonatal unit (a regional centre) hopeless at diagnosing & managing reflux. I had to push very hard for a referral to a paediatric consultant gastroenterologist, who took it seriously & tried various combinations. Omeprazole worked best, Domperidone was hopeless.

A baby who is desaturating after feeds should not be sent home. I would refuse to take a baby home under these circumstances. A saturation monitor will not help with desaturating, it will only confirm it. A home saturation monitor is extremely stressful.

I hope you can get something sorted.

Lou175 Tue 02-Jul-13 13:12:41

Wrote long reply and lost it grrr!
So I told the doc on ward round how I feel about the way things are being handled and he listened. Not sure what/ if things will change. He reluctantly agreed to speak to Mike Thomson at Sheffield.
I have her back on the sats monitor even though the day nurses today again didn't want it on. They can be so condescending with telling me it makes parents worry unnecessarily. The fact she went purple yesterday means it is necessary.
Thanks for all your support. I'm going to look into different milks and ask about Neocate.

Lou175 Tue 02-Jul-13 13:16:21

OK it did post after all. Now I've posted twice and cant work out how to delete one! I blame sleep deprivation!

blondieminx Tue 02-Jul-13 21:28:02

My god - incorrect information being put in hospital notes and that compounded/repeated at handover is totally unacceptable, and as for the nurse deliberately not putting the sats monitor on after the doctor requested it is inexcusable and to me, indicates a problem with authority/communications in the ward - please put in a complaint, in writing. Ask to see the senior consultant for the unit to explain why you will be doing this.

A transfer to a more specialist hospital can only be a good thing.

I am sorry that everything is so hard atm.

You are doing an amazing job, and your DD is a lucky girl to have such a tenacious mummy. Big hug to you, it really won't be like this forever x

Flicktheswitch Tue 02-Jul-13 21:41:37

Message withdrawn at poster's request.

Hoophopes Wed 03-Jul-13 19:17:05

I would transfer, know people who have been very happy with Sheffield for their seriously ill children! I would note all the inaccuracies and inform the current hospital that you have made detailed notes and when your child is better you will be making a formal complaint.

Hoophopes Wed 03-Jul-13 19:18:51

For th e reflux I bf and used enfamil AR then discovered he was Allergic to CMP so excluded dairy and soya in my diet and used nutramigem AA. The neonate is higher calorie so may be a better option. I hope you get that transfer tonight and excellent treatment!

Lou175 Fri 05-Jul-13 20:49:03

Hi everyone
I just wanted to update in case anyone is interested.
DD is now just NG tube feeding and has been a few days as she was literally bringing everything back up. She's tolerating the NG tube a bit better than the bottle which confuses me as the milk's going to the same place?!
She now has a bad cough and cold which isn't helping and the doctors thought it best to rest her from the bottle.
She had the barium swallow test today which showed reflux and that, as I already knew, the milk comes right back up as soon as she stops drinking. It happens v fast. It only came half way up during the test but the second she left the X ray dept she was sick in the corridor. She was sick again when she had a little milk by bottle a little later. So back to NG...all v frustrating and upsetting to see the tube in her little nose.
Incidentally, she then kept all her NG feeds down all day but when the nurse added some new Dalavit vitamins to the milk, she threw it all up. We had previously taken heroff Abidec vits for throwing them up. I think she just can't tolerate some things?

We haven't moved hospital as yet as we thought she needed to get over her nasty virus first and reevaluate. Mike Thomson at Sheffield recommended she try Neocate milk which we will try when she puts on a bit more weight. The dietician said it isn't high calorie and she needs the calories in Infatrini Peptisorb for now. I've reluctantly agreed but want to know if this change is the answer!

Finally, does anyone out there use the liquid omeprosol? The doctor at her current hospital told us it didn' exist, but I am now told that Mike Thomson prescribes it. I asked the hospital pharmacist directly, just to double check, who said it was a Trust decision not to use it as it's not as effective, it does not come from a trusted source, it still has bits in it (the reason we want it is that the bits clog the syringe and she doesn't get it all) and that it's expensive. I feel quite angry the doctor lied saying it didn't exist.
Is it true that the liquid version is not as effective as the solutabs? If it's just as effective then it's something else I'm going to have to fight for.
It's been such a tough week seeing her struggle with her virus and be so distressed with the sickness. Add to that the lack of faith in the doctor and lack of sympathy from nurses (and at times a little hostility from nurses as we complained about one nurse).

Thanks in advance.

Lou175 Fri 05-Jul-13 21:03:57

Sorry, I just also want to say thankyou for all your support. It made me cry reading your posts.
I forgot to say that we did complain to the ward manager but I'm not sure it has helped. Some of the nurses have been a little hostile since. Some overly nice!
Re Neocate, the dietician insisted it was not high calorie so I don't know? If it is then surely she should be on it?

Hoophopes Fri 05-Jul-13 21:26:48

Hi, sorry your dd still so ill. It sounds like some decisions are possibly finance based and I know neonate is also expensive. Perhaps a second opinion from Sheffield can give you a different perspective and when you are home you have the right to go to Sheffield for out patient appointments if that helps. We were offered nutramigem AA ( more expensive that nutramigem lipid 2) and will go not neonate when ds is 18mths. Sorry do not know about other drugs. We have recently had a second opinion outpatient at another hospital who told us our ds is low on calciu,, needs supplements etc etc, was insightful!!

All the best.

blondieminx Fri 05-Jul-13 23:49:57

Oh Lou it sounds like such a very tough situation. Sending you and your DD love and strength.

From your posts I'm hearing 2 things... that you've really lost confidence in the current hospital (and who can blame you - after all it's where a nurse has disobeyed a doctors order and then another doctor has given you incorrect prescribing information) and that the treatments offered so far are not suiting DD.

So it really sounds like its time to move her.

In your shoes I would be pushing very hard for a transfer. The squeaky wheel gets oiled first so be firm in your requests, and look the doctors square in the eyes when you speak with them.

If it helps, know that all us mumsnetters are right behind you.

I am thinking of you and your darling DD. X

LatinForTelly Fri 05-Jul-13 23:55:28

Hi Lou175, my DS was on omeprazole from 7 months old. He was ng tube fed and I asked about getting a liquid form of it as it quite often blocked the tube. I was told there wasn't one at that time (2007).

He's still on omeprazole and I think they changed the formula a couple of years ago to make them a bit more soluble - they are called omeprazole MUPS. We still give it via his gastrostomy. It doesn't dissolve, it's more a very fine suspension, but with the right shake-as-you-give technique wink, we almost always give the whole lot.

He was also on Neocate for nearly a year. It is the same calorie as normal formula so not high cal, but if it is the formula that works for your DD, then calorie boosters (such as duocal) could be added to it. Maybe not at 9 weeks but it is probably worth asking.

Neocate is v expensive so doctors can shy away from it but I remember reading a paper about elemental milks helping reflux cases, even when there isn't necessarily a milk protein allergy.

So sorry for all you're having to deal with. Hope your DD is on an even keel very soon.

Raeray Sat 06-Jul-13 00:15:33

Sorry to hear you and your little one are having such a tough time. Omeprazole definitely comes in a liquid form - it's a special preparation that pharmacy have to make up or get from a nearby hospital that has a pharmacy that makes it. I think its pricey and a bit of a faff which is why they sometimes say unavailable! Not fair if right for your little one. The other option as another poster says is the omeprazole mups - if they are mixed with sodium bicarbonate then they dissolve even better. Fingers crossed this helps your daughter. smile

Lou175 Sat 06-Jul-13 00:31:41

DD is on the solutabs, so is this different to the mups?

The dietician said we could go on Neocate but just not yet, so hopefully that won't be a problem. I just need to know how much weight she needs to gain first.
It's a new doctor on duty from tomorrow so will lay our cards on the table.
BTW she's not on SCBU any more. She's on childrens ward.

Lou175 Sat 06-Jul-13 07:16:58

Sorry, I now seem to remember the doctor saying he had spoken to the manufacturer about getting it in liquid form and they said the only way was to mix it with sodium bicarbonate but it would not be as effective andwould taste nasty.
Does anyone know if the liquids are less effective?

Sunnysummer Sat 06-Jul-13 07:36:03

You poor thing!

DS is currently on omeprazole in liquid form, which is making very little difference... Our pharmacist did say that it can be less effective as it is already slightly broken down by the time it reaches the stomach - this means it can be less potent, and also that you need to get it in small amounts, meaning quite a lot of faff and also a lot of prescription costs hmm

We are still struggling a lot at 10 weeks, though your challenges really put it in perspective, really hope all is okay. It's definitely worth pushing as early as possible, our little guy has just got worse and worse, with increasing apnoeas and what was initially silent reflux now becoming very spewy.

For formula - our Paed had him on a 2 week trial of Elecare (the fully hydrolysed one), while I pumped to keep supply up. For us it made no difference except exacerbating my sleep deprivation and taking away the one thing (bfing) that calmed him, but I know some people who rave about it.

Hope things improve soon.

Lou175 Sun 07-Jul-13 01:08:48

Hi Sunnysummer - it sounds like your LO's reflux developed like my DD's in that it started silent and developed into vomiting. I know DD has both now as the NG feeds she does keep down, she spends the whole time gulping it back. What has your doc said about the apnoeas? Does he go blue?
I will certainly be running all these milks by the dietician.
Well we spoke to the weekend doctor earlier who told us what we already knew - the barium swallow test showed the reflux to be very rapid and severe. I knew already that whatever hits her stomach comes right back up within seconds. She said DD is already on max doses so if it doesn't improve when she gets over this virus the next step is surgery. Obviously this just panics me as I want her better but not to go through surgery. Clearly they are taking this seriously now though.
I just keep thinking things have to go our way soon! I hope the milk is the answer.

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