11 week old diagnosed with (silent) reflux - tips?

[Nightfall1983]

So on Monday 11 week old DS was diagnosed with reflux (GORD) at A & E after failing to gain weight for 2 weeks. He started eating less (FF) around 5 weeks and with a couple of exceptions this slowly got worse. Repeated trips to the GP but they weren't interested as he was still gaining, just slowly. Then around 10 weeks he started screaming at the bottle, only whilst feeding and this escallated to more screaming fits and completely refusing several bottles a day.

The doctor in A&E was very good and finally took us seriously - he put DS on to infact Gaviscon, ranitidine and domperidone and made an appointment for us to go back on Friday (this was Monday). The meds seemed to make an instant difference, the next day he finished all his bottles with no fuss, no screaming. The next day was even better and he demanded bigger bottles. The third day was less good with a reasonable amount of screaming and only finishing half his bottles. Took him in to the appt on Friday and he had gained 10 oz in 3 days!! The doctor said that the meds take a while to be fully effective and might need adjusting as he grows.

Fine, but how to cope in the meantime? So far I've heard about:
Keeping him upright after feeds
Rubbing not patting for burps
Dummy to keep sucking action going after feeds
Inclined cot and changing mat

Any more???? Also, he currently has a cold and I think this has made the reflux worse - is this common? He gets constant colds so I hope not!

Sorry for waffling, feeling a bit desperate tbh...

[Ginshizz]

hi, I'm not an expert but DD had reflux (diagnosed at 10 weeks) and I just wanted to send some emotional support.

We had a similar experience with nobody being interested until I had the mother of all meltdowns in the pharmacy whereupon the pharmacist was enormously helpful. FWIW, what helped for us was:

• Bed blocks under the cot legs - do you have any? You can have mine if you like or get them from amazon
  

• Switching to comfort milk. It's a bit thicker so less likely to be brought up, but, if your LO is on Gaviscon, you probably don't need it
  

• Carrying DD in a sling for her daytime naps. Bad for my back but good for her tummy! Again, if you would like a kari-me sling, let me know
  

• The 'tiger in a tree' carrying position just before feeds to get rid of any wind
  

• Faster flow teats so she sucked in less air (not sure if that is a standard recommendation for reflux but it did work for us)
  

• Letting her go to sleep at night on her side; but then turning her onto her back when she was asleep (I stayed in the room with her until she started snoring then turned her!)
  

• Lots of distractions just after feeds to take her mind of things
  

• Avoiding any colic remedies like Colief or Infacol
  

• When she got to 14 weeks, my GP (after FINALLY taking us seriously) suggested extending the time between feeds. This seemed massively counter-intuitive to me but worked
  

By about 16 weeks, things improved hugely although she still had the occassional bout until we started weaning her at 22 weeks.

It was a very difficult time for us and I totally sympathise; I am sending you a large (with an option to go irish if you want ) and please let me know if you want our blocks or sling, or just some hand holding.

xxx

[Ginshizz]

Oh, also, something that didn't work for us was me joyfully trying to top DD up once we realised she could tolerate comfort milk. The poor little girl ended up being hugely full which obviously made things worse! I had to relax and trust that she would eat what she needed and that her appetite was a better guide to what she should be eating than my neurosis was!

[Bessie123]

You need to find a formula that doesn't contain lactose or soya - I bet you anything that is what is causing the reflux

[Ginshizz]

Bessie good point. I think the comfort milk helped because it is low in lactose as well as because it is thicker

[Nightfall1983]

Thanks for your responses. I think i partly just need to talk - feeling very down about it all.

Ginshizz thank you so much! He's still in the Moses basket at the moment and I have propped it up with upturned bowls - sounds odd but it works. But he'll need to move to the cot soon as he's getting bigger so I was going to buy some of those cot block things - would be v. grateful for yours, will pm you when not on phone. Interesting re putting down on side initially, haven't tried that and he's always gone down pretty well at night but in the last few nights I've noticed it getting harder so will try this.

Also I have a Kari-me sling (thanks for the offer though) which he does love. I love it too but dot use it too often due to the hassle of putting it on plus my back - but will try to use it more often as I guess it ticks boxes of keeping him upright and closeness.

That's interesting Bessie, I'd like to give him a few weeks on his meds (if I can stand it) before changing his milk but will try LF or similar if I do change.

[Nightfall1983]

Oh also tiger in the tree before feeds, great tip will try that straight away, I've been doing it once already crying with mixed results. I'm also finding him hard to wind.

Also good tip re not topping up too much, this is what I did Wednesday because I was so excited about him eating and I wonder if that led to Thursdays problems?

[Bessie123]

Try to get a formula that is soya free as well as lactose free, if you can. You might need to get it prescribed.

[Bessie123]

Oh, and gaviscon does seem to make babies very constipated, does one of your ds' meds deal with that?

[Nightfall1983]

No, though the doc did mention the gaviscon/constipation issue. DS has always been fairly constipated and actually has been a lot better since starting the gaviscon. I'll just keep an eye on it I think...

[Ginshizz]

Hi yes do PM me, very happy to put them in the post; they really helped DD get some proper sleep instead of grunting and groaning all night keeping me awake too !

It will get better, it really will. It just sucks to be in the middle of it though, I know. I remember someone on a reflux post when I was going through it said that parents of reflux babies should be given some extra vodka support as well as the babies as it can take its toll on our sanity.

You've done really well getting it diagnosed (I can't believe GPs and HVs seem so resistant to diagnosing reflux - my HV told me it was totally normal for babies to snort milk through their noses after every feed) and your DS is on meds which will help him out until he outgrows it.

How is he sleeping? Are you getting enough rest / feeling OK?

Oh and you asked about colds and reflux; not sure if it made it worse but when DD had a cold as well as reflux, it was just yet another thing that made her feel rubbish, poor thing.

[Nightfall1983]

Thanks Gin - have PM'd.

Am opening the as we speak. I think we were 'lucky' that circumstances dictated we were at a&e just when he'd failed to gain weight for the first time - the ER doc took it really seriously. I assume from what I've heard and experienced that if we'd taken him back to the GP at that time we might have got the gaviscon only and have to fight for each med. Bit worried that we're back in GP care now tbh, but hopefully the meds will work and it won't matter...

His sleeping is very vared, during the day only on me but at night pretty good really. Depending on how he's been that day he often sleeps for a 5 hr stretch followed by a 2.5 or even 3 hr stretch so can't really complain as its pretty good for 11 weeks - esp with the reflux. My sleep is not so good due to the stress

[Gumps]

Hi Nightfall. Firstly a big hand hold for you. Ds2 has silent reflux and dd1 and reflux. Silent was by far worse as dd was instantly diagnosed but also a happy puker. It took a long time for the gp to take me seriously with ds2 but I knew something was really wrong. I dug my heels in and eventually got a paediatric referral at the hospital. They wre amazing, diagnosed straight away and offered huge support over the next two years.
Ds2 had rantitidine and domperidpne but then he was prescribed something else beginning with l which came in tablet form. Brain isn't functioning (sat night wine and X factor mode sorry) but it is also prescribed to adults. Anyway this was what made the huge difference. I will google in a bit and find it for you. He was also on lactulose for the constipation and prescription man made milk. He was dairy, wheat, soya free until about 18 months but all fine now.
If I had been brave enough I would have put him on his front to sleep. I wasn't so I bought some bolster style things (they are in the Jo Jo catalogue) and propped him on his side. At the worst times he slept in his car seat.
I'm not going to lie it was dark days for us as he had horrendous sleep associations and didn't sleep through until he was 2. At worst he woke every 20 minutes.
The main thing that made a difference was development. I would definitely wean early and consider baby led as purée seemed to trigger his gag reflex. Crawling helped and walking hugely as it opens them up iyswim.
He is now a very happy cheeky 3 year old, the only hangovers being he refuses to drink milk and can make himself sick on demand. Handy for him when he doesntxwzntvyo eat his veg but I just ignore it. He can also make himself belch like a bloke down the pub!

[Gumps]

Omeprazole was the drug and neocate the milk. Give me a shout if you want to ask anything else.

[ILoveSparklers]

Just wanted to give my support. My ds had reflux and was on domperidone and rantinidine. It will pass.

[ILoveSparklers]

Inclined cot and upright after feeds. Plus try not to stress too much... Babies pick up on it... Try and enjoy this time.

[Nightfall1983]

Hi Gumps thanks for the handholding. The information is useful but the news of your happy healthy 3 year old is even better

Thanks ILove, trying to keep my chin up but its hard...

Did anyone else have a DC dropping centiles due to reflux? I know that's not typical and I'm scared of what it means for his future development. The docs are going to insist on him being on any new meds of a while before trying the next thing, if he keeps dropping/not gaining isn't he going to become malnourished? Will that impact on his future development? It's one thing if he's a 4 foot adult because thats what he was always going to be, but what if he was going to be 5'10 like his dad and just didn't get the early nutrition?

[Nightfall1983]

Oh also ILove you are absolutely right about trying to enjoy him - I do try to do this, I've wanted a baby for so long and now I'm just wishing he'd grow up and not be in pain anymore - sucks

[Gumps]

Ds had a huge drop but then caught it up again quite quickly. I would really push to be under paediatric care as they monitor regularly. I also had my paediatricians direct line number so I could call her if I was worried. Weigh weekly so you can keep a close eye.
However I'm sure the meds will start to do their thing. They do need to be adjusted regularly though as the dosage is all weight based.
I do have a huge guilt with ds2 as with the other 2 I can place every baby photo. However with him it was all about getting through the day and its all a bit hazy :( so I know it's hard but def try to enjoy.

[Hoophopes]

Hi - my son had reflux, again a struggle for medication and even seeing a paediatrician only resulted in gaviscon and ranitidine - because despite being sick and in pain after every feed he gained weight. born on 50th centile, tracked usually the 25th and ocasionally between 9th and 25th. Thankfully since I began weaning at 6mths it has improved massively! It was hard seeing him reflux all the time, however the medication reduced the pain and he just accepted it (not sure I ever accepted all the washing that went with it) and I just had a massive supply of spare clothes for him and muslins galore!!

Understand what you mean about wanting a baby so long (we waited 7yrs) but it does get better for them and if he keeps dropping weight ask your Gp to refer back to a paediatrician.

[Nightfall1983]

I'm going to see my GP early next week so will push for paediatric care and see what they say...

[messtins]

My son dropped off the charts completely, it was very stressful. He's back on his birth centile now at 2.5.
I highly recommend the book Colic Solved by Dr Bryan Vartebedian (nothing to do with colic it's about reflux and CMPI) and the Little Refluxers support board.

[narmada]

a note on the milk....

If you decide to change it - and i think it is somwthing to seriously consider - you need milk with modified cow's milk protein (CMP). CMP intolerance is far more commin than lactose intolerance and is almost identical in presentation to reflux.

My son had this and he developed a feeding aversion.

Examples of hydrolysed formulae are aptamil pepti, nutramigen, and neocate. The aptamil is the most palatable IME. neocate is vile.

[Rooobs]

Sorry I don't have time to read the whole thread - school run in a minute - so sorry if this is way off...

But just wanted to say Aptamil Reflux and Regurgitation formula (exclusive to Boots) worked miracles for us from the very first feed.

Good luck OP!

[Nightfall1983]

Hmm, lots of people recommending changing milk. I assume this is something that the GP is going to be resistant to? I feel a fight coming on...

[narmada]

a lot of GPs are not aware of cow's milk protein allergy / intolerance but some are.

There is loads of NHS information out there so would recommend you print some out and take it with you for reinforcement. Dont let them fob you off with lactose free - lactose intolerace in infants is really rare and usually results in faltering growth and dehydration.