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

(30 Posts)
Nightfall1983 Sat 24-Nov-12 14:52:42

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...

Nightfall1983 Thu 06-Dec-12 16:05:56

grin The doctor warned us that most babies don't like the Neocate and take a while to get used to it but he doesn't seem to mind much - still not drinking loads but no different from the usual formula. Hopefully when the inflamation in his gut from the old formula dies down we'll see a big difference. Back to a&e for a check-up tomorrow, they really are very good.

narmada Thu 06-Dec-12 09:03:04

Oh I am so pleased you got the Neocate.

Don't worry about going to A and E. It's often the only way to get any action. I think a lot of GPs just do a sum in their heads which goes like this: babies + unsettled behaviour + feeding issues = overanxious first-time mother. Grrr.

Is he drinking the Neocate? It's not the best-tasting potion in the world smile

Nightfall1983 Thu 06-Dec-12 06:09:48

Just wanted to come back to this thread with an update:
DS never really improved further after the initial boost from the reflux meds, at the next weigh in he had gained an oz and by the next weigh in (yesterday/wednesday) he lost 2 oz sad. Took him straight back to the GP who was v. dismissive and basically said oh well, lets wait and see what happens angry. Babies aren't supposed to loose weight, grr!

So I took him straight down to a&e, felt a bit guilty as it wasn't an emergancy plus i was ignoring the GP but couldn't stand it. As with out previous visit a&e were outstanding, the doctor listened to my discription of all his symptoms (reflux, ezcema, constipation, colic-y screaming, constant blocked nose - and ofcourse weight loss) and suggested it might be a cows milk allergy and prescribed Neocate formula which is cows milk free.

It'll take a couple of days to know if its working but fingers crossed...

(PS thank you again to Ginshizz who sent me some cot-raising blocks which have made a definate difference to putting him down at night thanks for you...)

Rooobs Mon 26-Nov-12 21:10:21

my GP and HV were fairly useless in that the GP didn't discuss milk at all, HV recommended Comfort formula. But I think it's a fairly new product so they may not be aware of it.

narmada Mon 26-Nov-12 20:24:08

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.

Nightfall1983 Mon 26-Nov-12 19:31:37

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...

Rooobs Mon 26-Nov-12 14:13:51

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!

narmada Mon 26-Nov-12 14:10:02

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.

messtins Mon 26-Nov-12 13:38:02

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.

Nightfall1983 Sat 24-Nov-12 21:05:18

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

Hoophopes Sat 24-Nov-12 20:53:52

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.

Gumps Sat 24-Nov-12 20:52:52

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 sad so I know it's hard but def try to enjoy.

Nightfall1983 Sat 24-Nov-12 20:28:48

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 sad

Nightfall1983 Sat 24-Nov-12 20:27:48

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

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?sadsadsad

ILoveSparklers Sat 24-Nov-12 20:15:58

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

ILoveSparklers Sat 24-Nov-12 20:14:08

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

Gumps Sat 24-Nov-12 19:52:53

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

Gumps Sat 24-Nov-12 19:47:34

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!

Nightfall1983 Sat 24-Nov-12 19:28:45

Thanks Gin - have PM'd.

Am opening the wine 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 sad

Ginshizz Sat 24-Nov-12 18:52:34

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 Sat 24-Nov-12 17:37:23

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...

Bessie123 Sat 24-Nov-12 16:32:22

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

Bessie123 Sat 24-Nov-12 16:29:52

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

Nightfall1983 Sat 24-Nov-12 15:44:04

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?

Nightfall1983 Sat 24-Nov-12 15:41:26

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.

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