Silent reflux - what to do when the drugs don't work?

[ick1efeet]

My dd2 is now 15 wks and has been suffering with silent reflux since she was 3 weeks. She is in so much discomfort and pain that she refuses to feed.

Almost 3 weeks ago she was admitted to hospital, I did'nt know what else to do with her and our gp is next to useless. She had a NG tube put in but only had one feed via this and feed orally for the duration of our stay (3 days). The paed put her on ranitidine 1.1ml (16.5mg) 3 x a day and domperidone 1.1ml (1.1mg) 3 x a day plus 1 sachet of gaviscon 6 x a day. She was also switched from Aptamil to Nutramigen Lipil formula.

Initially she seemed to respond to the treatment and for about a week and a half seemed an almost happy normal baby, however things have steadily gone down hill to the point where the last 2 days she has refused nearly very feed I've offered her and she has bearly taken more than 10-12 oz per 24 hours. She is currently screaming and chewing her fists through hunger but refusing to feed.

I am going to take her back to A&E tomorrow morning but would welcome any advice about what comes next in terms of treatment and also diagnoises as they did'nt do any tests of any sort last time. What tests should I be pushing for? Is there any that can determing what is wrong? Im at a complete loss at how to help her and its breaking my heart to see her in so much pain.

Sorry its such a long post, any advice would be greatfully received.

She may need to be on neocate or neutramigen Aà which are amino acid based formulas

Thanks Janey, I'll be sure to mention it when I go to the hospital this morning.

Is there no one else out there that can offer me any advice?

Definitely push for Neocate or Nutramigen formula. In terms of tests a barium swallow will show the extent of reflux, there's also a pH probe that can be inserted for 24 hours which gives more conclusive results but isn't particularly comfy for the child (expect a sleepless night!)

Are they the maximum dosages already? There's also a drug called Omeprazole which can help.

You may also be advised to wean....

If nothing works and there's weight lose/dehydration then it could be recommended you use an NG temporarily until weaning is established.

If the reflux is so severe there is a surgical procedure called a fundiplication but this is only used in very rare cases. Maybe ask for a surgical review though just to get in the system in case it needs to be considered in the future.

If you end up long term NG feeding then there's also the option of a gastrostomy (direct feeding tube to the stomach) which is more discreet and mote comfortable for the child.

The above is worst case scenario, hopefully your DD will begin to improve with a new formula and amended mediation.

If you need any other info PM me, DS2 was the worst case but is now a happy, healthy 2.4 yo. And push for help if you think she needs more x

Thanks joandmax that's really helpful, I'm stepping into completely unknown territory but I don't want to be fobbed off as this our 3rd trip to a&e in the last 5 weeks and she is so badly crippled by reflux that I just want to get her the help that she deserves.

It's so hard to watch them, I really feel for you. Are you under a paediatrician? Once ours actually sat and watched me trying to feed DS2 for over an hour she really stepped up and we got lots of help very quickly. I had to nag for her to watch but it seemed to be the only way for them to realise how bad it was!

I'll keep everything crossed for you this morning, let us know how your DD gets on

Like JoandMax said, omeprazole might be prescribed. It can make a huge difference, although it takes a while to have an effect so you have to persevere with it. My ds was prescribed omep but we weren't told how to administer it -- if you are prescribed the tablets, be sure to check this book. It's a sleep book but has an amazing chapter devoted to reflux and tells you exactly how to administer the omeprazole.
I also second the advice to nag.
Your poor DD. Can't bear to think that so many GPs are still in denial about reflux.
Let us know how the hospital appointment went.

Thank you ladies so much, we do have a paed but our appointment isn't till 5th July and I can't get her an earlier appt. on our last admission to hospital on the 7th he did observe me trying to feed for 4 hours with her screaming the whole time. That's why they placed an ng tube in but after that she picked up and started feed, albeit v.small amounts. Initially the drugs seemed to work but not anymore so I really want to push for tests to find out what's really going on. I'm so worried about her and no longer have anytime to spend with dd1 who is now starting to play up as a result. Dh doesnt understand and thinks its something that we have to preserve until she outgrows it. I feel quite lonely and frustrated, thanks for your support x

Unfortunately the common response from people is they'll grow out of it, just wean them - it's very difficult for others to realise how horrendous it is and how it impacts the whole family. The emotional toll on you is tough so make sure you look after you too and ask for help if you need to.

DS1 was only 20 months when DS2 was born and it was damn hard, he was so young he couldn't understand why I couldn't give him the attention he needed or wanted. All I can say it although it was awful at the time both my boys are happy, secure and well balanced kids now so it has done no long term damage to them at all. They get on brilliantly and love eachother masses.

Can your GP help at all to get you seen by a paed sooner? Maybe they could refer you up to children's assessment unit urgently so you could go today? Its not fair for your DD to wait in this level of pain......

I wish I could help more! But rest assured it will get better - DS2 was so poorly he could barely lift his head at 6 months old, was skin and bone etc Now he's a noisy, grubby, laughing ball of energy and fun! He still has a feeding tube but I rarely use it now (I can't even remember last time I did) yet 18 months ago ge was 100% tube fed with oral aversion and couldn't even look at a highchair without becoming hysterical.

I really feel for you, we are currently going through this the second time round with DS after DD also suffered the same.

Rantidine also stopped working for us after 2 weeks. Then domperidone was added and helped for a bit but not for long. We are now using omeprazole 20 mg on our 23 wk old DS.

Also neocate or nutramigen AA would also help as they are more broken down and won't cause allergies and reflux.

They don't need to out an ng tube, they just need to give the right treatment. Your GP can prescribe any of these medications themselves without seeing the paediatrician by the way.

I hope you're doing ok. Like JoandMax has said, it does get better. Our dd was terrified of food, gagged and choked on purees and just refused to eat. now she eats anything!

Nag away, you know your LO better than anyone else. Good luck.

Hi - can I recommend a support board called Little Refluxers? My son had silent reflux and MSPI and it's all that got me through. It makes a real difference to have support from people that have been there.
Would also highly recommend you get hold of a book called Colic Solved (depsite the stupid title) it's by a gastro-paediatrician and it's brilliant on reflux and milk protein intolerance.

Hello ladies, thank you all for your support, I really need it today as we are having a horrific day. After our trip to the child assement unit at the hospital on tues they changed meds to omeprszole, 4mg per day and also changed formula to nutramegen AA. On friday as I'd not seen any improvement I called my gp and asked him to up the dose to the highest for her weight so he up'd it to 15mg per day. We've been on 15mg for the last 3 days and as yet I've seen no improvement. We've only started the new formula today as this had to be ordered in especially. I don't know if the new milk will help because she's refused every bottle so far and is currently sat in her chair crying and trying to suck the flesh off her fingers! I don't know what to do, is it that the drugs aren't working or do they just need more time to take effect? I really am at my wits end, Dh is working today, not that he is of any use, all we seem to do is argue :(

Give the omeprazole time, it takes a while to kick in. Are you using Losec MUPS or the solution?
Omeprazole + a hypoallergenic amino-acid milk like the Nut AA is a big part of the solution for a lot of reflux babies but it will take some time to see the results. The gut takes time to heal. Hang in there, you are on the right track.
If she won't take the Nutramigen AA then try gradually increasing the proportion of it with the normal formula - it'll take a little longer to make the switch across but it will give her chance to get used to the (horrid) taste. Jen x

Have you tried feeding when asleep? My dd has silent reflux and is on many meds. I have to rock her to sleep in stroller and replace dummy with bottle in one swift gesture, and it seems to take longer for the pain to register so she eats more per day. I also weaned at 17 weeks which has added 4 more oz of milk in her rice porridge which she will actually eat.

So sorry It's horrible and I wish you luck.

Thanks Jen, your right it needs more time and yes she is on losec mups which she is very good at taking, I dissolve it in a little apple juice and give her 10mgs in the morning and 5 in the eve. I've just managed to get 1oz of formula into her with a syringe but she spat most of it out! Can't say I blame her, it's foul!! I guess I just need to be more patient I'm just so desperate for a break through.

Hi ophelias, thanks for the advice, yes she feeds much better when asleep and wakes 3 hourly during the night to make up for the lost calories but actually I hadn't thought of trying to get her off to sleep then feeding her. I guess ive kind of hit a wall today but am willing to try anything today.

You poor things.

The Omeprazole can take up to a week to work so persevere and glad the dose is a big one.

Recommend try feeding when asleep, I used to do the dummy/bottle trick - DS2 would take an ounce then I'd put dummy back in for a few mins then bottle etc He'd get wise to it and try and wake up or grumble but I could get 3oz in which was a result! Also we use to put him in his bouncy chair in front on TV and try feeds that way - we could never (and still can't) hold him in normal feeding position as he'd freak instantly.

Definitely mix the nutragimen in gradually with her usual formula as it tastes yuck and will get her used to it slowly.

What do you think about weaning early? It's not ideal but if it avoids the need for going down the tube feeding route I would give it serous consideration.

Hang in there! It does take a while for the meds and special formula to kick in, as the others have said. Just one thing: the apple juice might not be helping, as it is acidic. Can you dissolve the mups in water instead? They're tasteless, so I don't think you need to sweeten them. Or perhaps it was the doc who suggested apple juice, in which case ignore me! Keep strong. You'll get through it!

Sorry, forgot to add that maybe switching to a different type of bottle might help? The avent ones are so tough and nasty, IMO. We noticed a huge difference with DS when we switched to playtex drop-ins -- lovely and soft and easier for a small mouth to handle! You can't get them easily in the UK, but there is a UK supplier which delivers quickly: [www.infantcaredirect.co.uk]. If you go down this route you'll need to order a nurser, some teats and some drop-ins (don't bother with the liners, they're too fiddly). I think they also sell starter kits which might be useful.
Otherwise, Dr Brown are also good, although a bore to wash up and they're not as soft as playtex.