Silent Reflux..?

[Clio197]

I'll try and keep this short and to the point. Any advice is much appreciated!!

My LO, from birth projectile vomited up any milk that he has, my milk or formula. So I changed to C&G comfort, this helped greatly with the vomiting, but he still crys and screams ALL the time, no exhaduration, since the day he was born hes cryed 90% of the time, its heartbreaking. Anyways, he was starting to really refuse feeds, usual arching back, hiccups.. took him to the GP at 4 weeks, he was not interested as LO was putting on weight. At 9 weeks we ended up at A&E as I coudnt get him to take anything, and he was dehydrated etc. Prescribed Domperidone and Ranitidine for silent reflux - excelent I thought, finally he will not be in pain poor lil thing.

Two weeks and two days later - No change, if anything hes worse than when he was not on these meds.

Any ideas?? Has this happened to anyone here?

Hypoalergenic milk worth a go? Does it sound like he could have an alergy, would the ranitidine work if it was an alergy?

Im at my wits end now... appologies for spelling and/or grammer, I have typed this very fast as I dont like leaving my LO in his bouncer to scream.

Many thanks in advance

I would go straight back to the paeds consultant who prescribed the Ranitidine/Domperidone, and ask for something stronger - I think they give Omeprazole next. Ranitidine will do nothing for allergies, either, but if your LO has bad reflux its not really strong enough anyway.

My dd has silent reflux, and the GP was very unhelpful for the same reason - still feel when I hear others being treated the same way! She was eventually diagnosed whilst in hospital with suspected bronchiolitis, thankfully. In her case, Ran/Domp was enough to sort the problem - and time has helped a lot too.

Wishing you luck, its heartbreaking and exhausting until you both get some relief, I feel for you!

ps I know nothing about allergies, myself, but if Omeprazole doens't help I'd try that route next....worth asking around on the allergies section, maybe??

Thank you so much for your reply.

I am going back to the GP on friday, but, he was clueless last time, and I dont know if hes going to even know what to try next. Im glad it worked for your LO tho!! Mabey mine just needs dose upping, or trying something stronger.

Thanks in advance for any other replies/suggestions.

Clio - so sorry you are all going through this. My DS also suffered from reflux - sometimes projectile but, more usually the silent variety.

GPs are SO astonishingly crap with this. Makes me furious.

Sometimes it is trial and error with medication. Can you get referred to a Paediatrician? (do you have private health insurance/can you afford to go privately for a referral? It speeds things up no end - one colsultaion is not too horrifally expensive if you can afford it). If not, try going back to whoever you saw at the hospital and ask them for help. NEVER take no for an answer with GPs.

I'm aware that sometimes babies with reflux also have a lactose intolerance (was not the case with DS) but I would not recommend coming off milk without medical advice.

I'm so sorry. In the meantime, are you doing all the other things (keeping him upright during and after feeds, having him sleep on an incline, winding him as though it were an olympic sport, getting some help so that you can take a break).

Come back on when you can with more info but, otherwise, go back and tell them things aren't improving. It may be that they need to up or change the meds.

thinking of you.

Yes, we could go private if thats what it takes, anything for my LO.

Yes, GP has been totally useless!!!

Why/How would he have gotten worse since being on the meds??

Hes never totally refused bottles before, where as now he is...

I dont know what to do with him.

I really feel for you Clio; my DD2 (11 months) has severe reflux that went undiagnosed for too long. But you really shouldn't need to go private - go to your GP and explain what's happening with your LO and how concerned you are, and ask for a referral to a paediatric gastroenterologist. I can't see why a GP would refuse to refer you.

A gastroenterologist will be able to review the medication your LO is on and discuss the likelihood of allergies etc. It's really horrible to have to struggle by yourself with feeding. But it's good that he is putting on weight. When my DD's reflux got really bad, she just stopped gaining weight - I was at my wits' end. She's been on domperidone and omeprazole for a couple of months and I think they are helping a bit - but our consultant explained that we shouldn't expect the medicine to work miracles, that it should ease the symptoms a bit and that DD will probably grow out of it in the next few months. Here's hoping!

It might also help to have a conversation with a paediatric dietitian. But the starting point is getting your GP to refer you ASAP.

Reflux is heartbreaking, and under-discussed. My DD2 has a serious heart condition and will need surgery at some point to correct it - but at the moment her life (and ours) is much more affected by the reflux and ongoing feeding problems.

Keep us posted on how you and your LO are doing.

With regard to dosages, Clio, yes - they can make quite a difference. They are weight related, and my dd was put on the maximum dose for both Ranitidine and Domperidone - then we increased it according to her weight gain.

I suppose if your LO wasn't on a high enough dose to start with, and then put on weight, getting worse would make sense...also, my dd's reflux definitely got worse up to about 13 weeks of age, then stayed the same, and eventually started to improve.

Its so true that struggling with feeding on your own is awful - any support you can get from professionals has to be a good thing.

Haven't read other replies, but sounds very much like milk intolerance to me.

Breastfeed if you can, giving up all dairy yourself, or use a hypoallergenic formula (Nutramigen1, Pepti-Junior, Neocate).

I'm a GP and would like to think that I'm not 'astonishingly crap' at managing silent reflux. Particularly considering the hell we have been through with my ds and his silent reflux. BTW- if there's loads of puke, the reflux is definitely not 'slient'.

Ideally, your ds should see a paediatrician. If you were initally prescribed the medication in hospital, then ring the paediatric consultant's secretary and explain that your lo is worse, you are concerned and would like a review. They may be able to see you on the ward or in a free clinic spot. Part of the problem may be the assumption that it is reflux. He may have CMP intolerance, a hiatus hernia or countless other things which need to be considered and possibly investigated further. If you get nowhere with the paed secretary, see your GP or HV and ask to be referred.

All the best

Elibean - he never got better since taking the meds... do you still think that if the dose was to low, he would get worse??

hes had 4oz so far today...

Called NHS Direct...

Off to A&E now ...

good luck, Clio - perhaps its a good thing, because at least you will get seen by a paediatrician now.

I agree with Emma, really important to get diagnosed accurately...my dd was 'scoped (she hated it, obviously, but it was very quick and worth it) and her condition was obvious (she has laryngomalacia, most kids with it have reflux too).

Am thinking of you, xxx

Are you back yet Clio? How did you get on?

Yes, got back early this morning, very helpful and sympathetic they were.

We got some fluids in him (bit of milk, bit of cooled boiled water) via syringe... so that was something. Want to, what I assume pin prick test (??) him for a CMP allergy, if that shows up then, try Neocate or something simmilar. If hes not allergic or showing an intoerance then investigate further... so were back down there tomorrow!! And im to try and get anything in him any way I can, getting him to suck water off a flanel, syringe, dipping dummy in milk...

BUT i hurd him stiring at about 5am, so got him up ran downstairs grabbed a bottle and gave it to him, in his dazzed state he sucked the whole lot down!!! So thats something, this morning hes back to refusing, might wait till hes asleep for his nap then see if i can sneak the bottle in his gob!!

Clio, so pleased you are getting some help - even if you're not yet at the answer. It's heartwrenching I know.

Emma, sorry that I generalised - I know I am fairly highly strung on the subject because of my own experiences and being told that there was nothing wrong with DS and, then later, that there was nothing that could be perscribed to help the pain. My GP was particualry reluctant even to refere us as "It would be a waste of time, we would just be told the same thing". I have a friend whose DD also had reflux who was also told by her GP that it was "just colic" etc. She only got the help (and diagnosis) she needed when DD stopped breathing and was rushed to A&E.

I know of so many cases where the GP appears unaware of the condition and it is an agonising battle to gain help. It astonishes me because I know of so many cases now(I didn't know it existed before I had DS) that I cannot understand why there is not more awareness in the medical profession.

However, I was wrong to generalise and I'm sorry you have been through this too.

My gp is fab. She also knew all about refulx whn my 2 dcs had it

She even knew about reflux too

Elffriend, apology accepted. I know that it wasn't aimed at me specifically.

My ds suffered terribly for the first 8 weeks and stopped breathing on 3 occasions. On one I had to mouth-to-mouth resuscitate him for 5 minutes while the ambulance arrived. It was horrific and an experience I haven't entirely recovered from.

I agree that there is a certain lack of seriousness attached to reflux by many medical professionals. I certainly remember being taught that reflux usually doesn't need treatment or referral unless accompanied by poor weight gain. Having witnessed the agony my ds was experiencing, I know that is cobblers.

Clio, I'm glad your lo is getting somehelp.

Clio i hope you get some answeres soon. We are in the same boat. Our son was born 6 weeks early and spent 3 weeks in neonatal intensive care. within 2 weeks they had diagnosed reflux and put him on domperidome, ranitidine and carobel in his milk. He has never been really sick, he has silent reflux. He finally came out of hospital only to be rushed back in after severe colour changes. They adjusted his meds and sent us on a resuss course. He has a few other problems and has had 3 chromosome tests all of which have come back clear.He saw ent as he has noisey breathing and has been diagnosed with a narrowing in his tubes but as he has a small jaw they are reluctant to give him a ga to investigate.I really do feel for you and send you my love, there are too many people out there that think reflux is nothing to worry about.

Clio i hope you get some answeres soon. We are in the same boat. Our son was born 6 weeks early and spent 3 weeks in neonatal intensive care. within 2 weeks they had diagnosed reflux and put him on domperidome, ranitidine and carobel in his milk. He has never been really sick, he has silent reflux. He finally came out of hospital only to be rushed back in after severe colour changes. They adjusted his meds and sent us on a resuss course. He has a few other problems and has had 3 chromosome tests all of which have come back clear.He saw ent as he has noisey breathing and has been diagnosed with a narrowing in his tubes but as he has a small jaw they are reluctant to give him a ga to investigate.I really do feel for you and send you my love, there are too many people out there that think reflux is nothing to worry about.

hi,
thank goodness for mumsnet. I am sure my son has silent reflux and am tired of everyone sayking - but it's ok - he's gaining weight. watching his little face in agony, and listening intently to every breath for signs of choking (noone takes me seriously when I tell them about this and try to convince me it is normal baby noises).
we have infant gaviscon and a wedge in his moses but nothing seems to ease his pain.
AM glad to hear there are more options, and that I should persist - really feel like i get the 'over anxious first time mum' treatment.
Thanks and hope everyone is finding something that helps their little ones.

Hi
My son is now 8 weeks old, and has had reflux including silent reflux since birth plus very bad wind (colic). We have tried lots of things - and finally put him on 6 sachets of Infabt gaviscon plus colief in his bottle each feed (on Aptamil). I have found that the IG helps to reduce the amount of vomit a bit, and colief seems to help his painful wind. The GP has been v unhelpful, and so we paid to see a paediatrician last week who prescribed lansoprazole and said to take him off IG as it doesn't work, and also to take him of colief.
I have read the possible side effects of lansoprazole, and am worried about giving it to him - ranitidine seems to be milder, and wonder if I should go back to the Paediatrician and ask to try ranitidine first? Has anyone else used colief with ranitidine?- or IG and ranitidine?