Reflux baby, any advice?

[lisajoanneuk]

This may be a bit of an essay but I'm in dire need of help and advice. I know there are hundreds of threads on reflux, I've read through most but none help with my situation so please bear with me.
My son was 2 weeks old when first diagnosed with reflux, he was a perfect happy little feeder and then we ended up at emergency doctors because he had a "viral infection" (I feel I was just fobbed off with this excuse) then after that it all kicked off :( the doctor first prescribed the gaviscon sachets to add to his milk, he was on sma gold. This worked for a week then the sickness came back with vengeance, we couldn't change his nappy without a 2 hour screaming fit. The HV tried to advise bless her but she was young and suggested his normal doctors. I got him an appointment and he was neither use nor ornament, as my son was gaining weight he didn't want to know. We were on and off with the gaviscon for another few weeks hoping it'd start working but nothing. Between seeing the HV again and his docs I managed to have my lil man tested for lactose intolerance, apparently this was negative. We switched him onto C&G comfort suggested by doc, to be used with gaviscon?! (Have read a lot of debate on this subject whether to use with thicker milk but was suggested by doc?) it didn't help anyway so then I thought stuff it and changed to C&G anti-reflux, it was a god send! The change was instant, I had my happy little boy back. The screamin fits stopped, he starte sleeping properly at night and only waking for one bottle. He was more settled in the day and content, happily lay there and play. A different child to be honest, it was heaven. When something's too good to be true, it usually is. Like everything else it didn't last long, the HV suggested going back onto gaviscon with the anti reflux milk, this helped but the sickness was still there, just not as much. The screaming fits, arching back, all the symptoms etc were still there. Went back to the doc, again he's nt too bothered, as my son is gaining weight he couldn't care less. But he doesn't have to sit there while your baby screams in pain or stand there all night rocking him to sleep if he ever eventually will :( so I've been trying diff things myself, I tried to go back to a normal milk, exorcist style, normal with gaviscon, still exorcist. Put him straight back on anti reflux, and he's still sick, a lot, but it's better than the alternative. Tried him with food, he loved it, he's not ready properly yet though and again that all came back up. I'm at my wits end now, no one wants to help him. He won't feed properly, the usual kick off at bottle but then screams cause hungry, anyone with a reflux baby will know what I mean. I'm in tears myself sometimes as I wish I could help him and take the pain away. He's now 5 months old and won't feed, won't sleep, we have no routine and the whole household (I have 2 older children too) revolve around the lil man. So anyway the gaviscon doesn't work, the anti reflux milk doesn't work. The doctor won't do anything other than gaviscon. Can anyone advise?

Ranitidine would be your next step.

Ask for demand referral to a paediatrician. Meanwhile, if GP follows the prescribing cascade the next thing is ranitidine ( anti acid medication) I think there's been some guidelines recently that refluxers should be less medicated (my affected child is now 4) but as you say, v easy for the GP to see a 10 min snapshot and conclude child is fine and mother is hysterical, v different if you are living with it.
It doesn't sound like anyone has suggested milk protein intolerance which is a v common underlying cause ( around half of babies where reflux persists beyond 12 weeks). To test for / treat this you would need a trial on prescription hypoallergenic formula and I'd be more suspicious if you also have congestion/snuffles, abdominal pain and wind, mucussy poo or rashes. It's different to lactose intolerance which is rare in babies.
Try to get hold of a copy of the book Colic Solved,which despite stupid title is the bible on reflux, written b a gastraediatrician. A lot of HPs are not clued up on reflux, you may need to do your own research.

In our case we got nowhere until we tackled the problem from both angles, controlling acid to reduce pain/damage (Omeprazole after a few months on ranitidine) and dairy free diet.

Written by a gastro-paediatrician

Thank you for your quick replies. I have tried to keep him off the medication as I don't like it really to think of him being medded up, why I've been through so many milk changes, I've even considered soya but it says not to without health professional and with the lactose intolerance being negative I stayed away from it. When I asked for intolerance test I also mentioned milk protein and they fobbed me off saying that it was very rare, I did feel fobbed off though. And funny you should mention the wheezing/congestion/sniffles, I asked him to be tested for allergies too as he has been like that since birth, again I was fobbed off, his doctor said it's "a happy wheeze" and all babies do it. My worry was because I have a cat but he did it in hospital too (due to bleeding I was in from 1 week before he was born till a few days after so the cat wasn't around him then) and from all the previous posts I've read regarding reflux a lot of people say constipation is a problem but he never has, through the milk changes, the gaviscon, anti reflux, he's never been solid, always loose, wet and mucusy. At one point so bad he ended up in hosp being tested for dehydration, that was heart breaking in itself when they had to take blood, he screamed so bad :( but because he didn't have a rash they said it was nothing to worry about. He left hosp with a supposed throat infection and another viral infection :/ I know the next step will be back to the doctors but it's disheartening to think I'll just be fobbed off again, I may hve to ask to see another doctor. Thought I'd try and see if anyone had been the same with anti reflux milk not working, every thread I read it seems to have helped them, though none mention long term just a week or two into it. I'll also try find that book online, shouldn't be too hard, hopefully lol

The book is on Amazon,author is Dr Bryan Vartebedian.

My son was on antacid meds from 4 weeks (ranitidine) then onto Omeprazole at 4m and off meds by 16m. If they are refluxing badly and not on meds they can end up with terrible damage to the lining of the oesophagus, I know of children who have ended up tube fed because swallowing becomes too painful and they won't eat. Obviously I can't see your son and he may be nowhere near that bad, but certainly my LO was in pain. An adult would not put up with heartburn, they'd try the gaviscon and if it didn't work go back to the doctor. It is really crap that you get so much fobbing off, been there, but if you think your baby is in pain you have to be a pain in the arse until someone listens. We found because it's considered so normal in young babies we didn't get much help until he was 4m old, by which time they were all throwing their hands up that he had dropped off the weight charts, conveniently ignoring the groove in the carpet worn by my feet telling them he was not right.

That sounds really stressful.

Mine was copiously sick until about 5 months but was never in discomfort and no other issues except a bit slow to gain weight until around 12 weeks. Even so, my GP offered ranitidine (more or less said it was my decision whether to use it, I decided to leave it as he was happy in himself). So if they offered it to mine with much milder signs then it might be worth asking about for yours. I have found different GPs do have different attitudes so asking to see a different doctor might make sense if you have lost confidence in the one you saw before. The health visitors may be able to help with making an appointment if you have a stupid appointment system like the one in my local surgery...

At one point we were also prescribed carobel powder, which is a milk thickener, natural ingredients which sounds like it might suit you if you're not keen on medication. It didn't work well for me as I was mostly breastfeeding so I can't tell you whether it worked or not but might be something else to ask about?

Sounds like you had a right time with them bakingtins :( does the ranitidine help at all then?
Yes Imeg, I have to ring in the morning to get an appointment for the next day, what help is that when he's in pain and not eating today :/
I couldn't wait that long anyway so I rang NHS 111 and went to urgent care at the hospital hoping that they would help. After being in there an hour and explaining all his symptoms to the exact detail and lil man was scowered over limb from limb and checked for other illness and/or infection (I was asked a lot of dodgy Ebola related questions) I was finally offered ranitidine? (Spelling?) she left the room and then came back and told me she couldn't prescribe it, neither could her senior doctor and to continue down the line of his GP and get him to refer to a paediatrician (which could take weeks minimum). That was it, I was going down fighting if that's what was needed, I kicked off a right treat :( I'm ashamed to say she did get the brunt end and it wasn't necessarily her fault but I suggested I go round to A&E and see if I could be helped there, or storm upstairs to the children's ward to be seen there, she didn't know what to say. So now she's faxing a letter over to the GP surgery so that when I ring tomorrow they can see I've been to urgent care and that lil man needs an appointment tomorrow with a quick referral to pead. I hope it works as he's hardly ate anything today, an ounce here and there when he's not fighting with the bottle and thrown up the rest :( unconsolable again till he collapsed from exhaustion and probably starvation, how can they refuse to help?! :'(

Oh no, hope you make some progress today.

Hope you got on better today. ranitidine did help initially, it tends to get less effective over time so in most cases I'm aware of you work up the dose range and then end up on a PPI like Omeprazole. A trial on it should at least let you see how much of the symptoms is related to reflux pain. Ask for the adult 15mg/ml stuff, not the paediatric 1mg/ml, it's a much smaller volume to get into them (likely to be less than a ml).

Lisa it sounds like you have been through hell and I think you need to be seen by a Paed (and a consultant not a junior) asap. You are an experienced mum and you know that your baby is in horrible distress and there is no reason that should not be sorted out as soon as possible. Both my babies had horrible reflux (without significant weight loss) and mine were on omeprazole (next step up from ranitidine) - I appreaciate you don't want to unnecessarily medicate but it was a godsend for us. It is well tolerated in babies and as an above post said much less risky than not sorting out bad reflux, which it sounds like your bubba must have. But any senior paediatrician will be able to assess this plus consider cows milk protein allergy and any other differential diagnoses. Ps omeprazole may take a week to see an effect - his gullet may be quite raw so will take a while to heal. We use the losec MUPS which can be dissolved in water or at 5mths in fruit purée which is more palatable and only once per day. I also find the usual stuff ie reflux wedge, thickened milk is also helpful. May want to avoid acid foods eg citrus foods until he is improved.

I just wanted to reiterate what the others have said. You have the right to demand referral to a paed, so regardless of what your GP says, ask for a referral. Our son has reflux, and we were fobbed off so much in the beginning that he dropped off the charts due to feeding being so painful for him. Tube feeding was discussed, but he had a good gain last month so that is on hold. He is 11 mo now and still suffering. Doesn't eat, is in significant pain when lying down, and sleeps terribly, screaming out up to 15 times a night. We found out that his ranitidine had stopped working at 8mo (GP told us it wasn't possible!) and we have turned a bit of a corner in getting on new meds which seem to be helping, but his appetite is still awful.

My point is, the longer it is left, the worse the consequences in terms of pain, ulceration of the oesophagus and associating laying down and eating with pain. You may be reluctant to have him medicated but wouldn't you take painkillers for pain, or antacids for heartburn? We are our babies' advocates and we need to do whatever we can to make them as happy as possible, so demand that referral!

And the book mentioned above is amazing. See if your library has a copy.

Good luck...it really isn't easy. X x