All new deluxe reflux support thread

[buttonmoon78]

Welcome one and all!

Hello! Is it okay if I join you?

3 weeks ago my now 7 week old started behaving oddly - night feeds became a total trauma and she stopped sleeping as well as she previously had. She stopped taking as much formula and gradually became more unhappy. Then one day she just shrieked all day - literally all day. She was going purple and just couldn't be calmed. The same day she started fighting the bottle massively and in 18 hours took 30ml.

A visit to the GP saw us getting an immediate referral to the paediatric ward where we were kept in overnight and started on rinitidine, domperidone and infant gaviscon. All was ok the next day so we were discharged. However, the next day my DD seemed to decide enough was enough and simply refused to eat. In the end she slept for 24 hours including through medical examinations and a prick test. She was then diagnosed (is that the correct term?) with Milk Protein Intolerance and moved onto soy milk.

Slowly she has built her appetite back and, for the most part, the meds and milk seem to have worked a charm. However, I still have lots of questions and there are still tough days.

I hope that my epistle hasn't put you all off me!

Hi my 3mo DD has been a happy chucker about 80% of the time up, but the last couple of weeks she has started refusing feeds, and is getting to the stage where sometimes she'll refuse feeding for several hours of the day, screaming until she goes to sleep, then wakes up screaming again. It seems to be getting worse and worse (I read on the cryingoverspiltmilk website that quite ofen babies don't show pain from reflux until they get to 3 months) but the Drs and HVs attitude is just that it's normal spitting up. I don't know quite how normal it is to spit up huge quantities after every feed, and still be spitting up seveal hours after a feed, but I hate seeing her in so much pain when she's obviously hungry.
Any tips on how i get message through to them that I want this taken seriously? And is it worth trialling just Gaviscon first or should I ask to start straight on Ranitidine?
Thanks

Smile we started straight on ranitidine as DS is BF and getting 15ml of gaviscon into a BF baby with each feed is just not going to happen. In the end we've been put on omeparozole, - domperidone and ranitidine didn't cut it. I'm on a soy and dairy free diet too to eliminate them from my milk.

smile how are you feeding LO? By that I mean is it possible to keep a log of quantities? My LO is formula fed and docs seem reassured when dealing in exact figures. If you can try keeping a diary so that the extent of the food refusal can be understood.

Being formula fed also makes the IG easier to administer. It seemed to help my LO who was mainly an acid refluxer but latterly became acid and chucking up.

Also, smile, I reckon that the more clued up you are the better. Go in wih a clear sense of what you want to happen whether that be a trial of meds, referral to a paediatrician or possibly a dietitian.

I was terrified of not being taken seriously but luckily had a GP who was all over it. Knowing what you are talking about re drugs and so on should really help though.

Hi passmethecrisps we are EBF so difficult to know exactly how much she takes, but is gaining weight really well, which I think is why Dr and HV don't take any notice. But have read that some reflux babies do this because it soothes their poor wee throats. I think you're right about going in with a goal too... I tend to be a bit too passive (even if I know they're wrong) so must have a plan!

Thanks yellow wellies I hadn't realised you had to get so much gaviscon in! I can see at least 12mls of that ending up on me . Think I might ask to trial ranitidine straight away. We have been a bit better today, I've figured out that she will calm down after about half an hour and then can eventually feed but with lots of pulling off and fussing in the process. How long did it take for you to see an improvement after you went soy and dairy free?

Good luck soy. We saw very speedy improvement from the rinitidine and domperadone then again with the soy. I would say max a week to see very definite improvement but LO was certainly more comfortable straight away.

My LO has been quite grizzly and upset today so I am wondering if her weight has increased. The medication is VERY weight dependant so ensure that you keep having the dosage increased as your LO grows.

Keep us posted on how you get on.

smile it takes 2 weeks for dairy and soy to leave your system and another 2 weeks to leave the little one's system - so you'll see the full effect in a month but we are already seeing an improvement after cutting them from my diet 2 weeks ago. Indeed within a few days we saw a change, and now if some muppet in a restaurant gives me dairy (it happened at the weekend) despite saying a dish was free of it, we can tell in a couple of hours as LO goes batshit.

Jonas was growing really fast too as he was comfort suckling off me (breast milk is an antacid) now he's on the omeperazole he feeds much more normally i.e. every 3 hours during the day and 5-6 hours at night. Previously it felt like he was on the boob all day!!! I'm expecting his growth to slow down now. It's annoying that some in the medical profession only take reflux seriously if the baby is a 'scrawny screamer' mine was a 'tubby screamer' and that's distressing too!

We are on day 2 of omeperazole and the difference is AMAZING! But we had this for the first three days on ranitidine and then he got used to it / the effect didn't last so I'm prepared for some backwards steps and possibly having to up the dose.

I agree with pass go in and state clearly what you want. I got the doc to miss out the gaviscon step by putting my foot down and challenging him to get 15ml each feed into a BF baby. Also we've a family history of this so I knew more than the doc - sadly we couldn't get the liquid omeperazole on the island I live on (none of the pharmacies or the hospital have it) so we're on dissolvable tablets which aren't quite as good but are doing ok for now.

Awesome thanks so much for the advice! that going dairy free is so effective... I'm a bit of a dairy addict but will have to manage I guess. At least if it stops the screaming it'll be worth it!

Good luck smile. Sorry for christening you 'soy' yesterday - obviously got soy on the brain

YellowWellies - DD4 is on Losec MUPS omeprazole dis-solvable tablets 5mg a day, I didn't even know there was a liquid (DD2 was on Losec MUPS for gastritis but had side effects so is on lansoprazole). DD4 is also on ranitidine 0.3ml three times a day & domperidone 0.8ml 4 times a day but I think the doses need to be increased as she's been on those since 2w & she's 15w now.

I am wheat, dairy & egg free, I think soya free will be the next step.

Interestingly enough she's also been diagnosed hypermobility syndrome (HMS) which has links with reflux (she has super soft, super stretchy skin, blue sclera & 3 family members with HMS). Tiny bit of info here

What is he difference between domperidone and omperazole? We have reduced DD's domperadone dose today as we worked out it was causing her terrible stomach cramps. I am not sure she needs it anyway being a silent refluxer

Interesting info about hyper mobility - I will take a look at that link

Domperidone speeds up the baby's gut so it moves milk out of their stomach quicker, it is also an anti-nausea drug.

Omeprazole is a proton pump inhibitor aka an antacid.

What was causing her cramps? I'm glad she's on the mend

Thanks truth. She takes rinitidine so I imagine the omperazole is much the same?

We dropped one of the dozes of domperidone and changed it from 1.5ml to 1ml. She was much better this afternoon and this evening so I presume it was the domperidone causing them. I read elsewhere that it can cause them because it moves the food through hich can then put pressure on the gut

When I rubbed her lower tummy at bathtime today she properely screamed so I presume her tummy is still very delicate. Poor wee sausage.

We will keep the lower dose unless we see any problem with sickness. The only issue though is that she is very prone to constipation and the domperidone seemed to really help this.

Feel like we swap one evil for another sometimes.

She is currently sleeping nicely though so fingers crossed

Pass domperidone made Jonas miserable too - as he's BF the doc let us drop it as milk leaves the stomach pretty sharpish anyway.

Interesting YW. At our last checkup the consultant said he was 99% convinced the reflux symptoms were as a result of the CMP intolerance but was happy for her to stay on the meds. We did wonder then why he ramped up her dosage. I am happy for her to keep taking it because constipation was previously making her miserable and she is by no means 'free running' now. I think it will be a bit if trial and error getting the dose right.

Truthsweet the omeperazole liquid is, literally 100x more costly so most GPs fail to mention it!

Interesting about the HMS I have a lot of those symptoms!

Am I right in thinking that hyper mobility is what we used to refer to as double jointed?

I've been watching this thread for a while now as I suspected my LO has silent reflux. Having tried many things over the loooong bank holiday periods, have now been to the GP, and feel llike I can tentatively say...

Gaviscon has saved my sanity!

Am keeping my fingers and toes, legs, arms, etc crossed it continues to do the job. Thanks for all the tips!

Pass - yes it is

Thanks truth

Hi there bigpig I am so pleased that IG is giving your wee one some relief.

I fear my wee one might have grown too big for her current dosages of meds. She has been pretty screamy and miserable today. It is great she has grown though.

Well done P for packing on the pounds - poor you Pass on the screaming - I think we might need a higher dose for J too (he's on the lowest possible dose of omeperazole), so, sigh, another call to the GP on Monday. We must look like nightmare Mummies!!!

I always seem to get the same GP each time I call up 'Hello Dr XX, it's Mrs Sweet again, I'm calling about my daughter', 'Which one?'.....

All 4 of them (and me) have health problems (nothing serious like a heart condition or liver failure!) that seem to mean 40,000 medical appts - last year we saw physiotherapists, SALT, Paeds. ENT cons., Paeds. cons. for 2 DDs, Paeds. Audiologists for 2 DDs, Paeds. phlebotomist, eczema/asthma nurse, dermatology nurse, dietician, neurologist (me), A&E/ambulances for asthma attacks/bronchiolitis/seizures, admittances for asthma attacks. I'm not even going to go into how many appts I had for DD4's pg.

This year I am wishing for a hospital free year (but as that isn't going to happen as few appts as possible!)

Crickey truth! Fingers crossed you and your children get as healthy a year as possible.

I did hear about a couple whose baby had silent reflux. They were both GPs and took there LO to the hospital due to breathing problems caused by the reflux. They took him so often and were not taken seriously to the point where they were branded 'problem parents'

I thank our lucky stars that our GP is on the ball and doesn't mind my googling

Thanks Pass - 1st appt of the New Year is tomorrow though, then one on Tuesday & one on Thursday Start as you mean to go on eh?

I got terribly patronised when DD1 had reflux (nearly 7y ago when reflux was a bit unknown) - DD1 could vomit like you were pouring milk out a jug & fed for 1h 45m every 2h at her worst point. I kept being told 'But babies do posset, Mrs Sweet' It wasn't until she started losing weight anyone took me seriously. Prior to that I was considered neurotic.

By that point though DD1 looked like a famine victim - you could see her ribs, she had a bloated belly, little spindly legs/arms, and a bobble head - she still fitted in NB clothes by width if not length (she was approaching 4m at the time & had been 7lb 12oz at birth) and had dropped from 75th%ile to 2nd%ile yet she was between 75th-91st%ile for height!

I am very glad this time round I had a different GP & they took me at my word that she had reflux at 2w & didn't even insist on infant gaviscon before trying domperidone.