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To ask for your silent reflux experiences??

(49 Posts)
Onthedowns Fri 15-Apr-16 16:04:26

Posting here for traffic!? My DS who is 6 weeks old -5 weeks premature. Is suffering the above plus slightly colicky. My 4 yr old dd had it but was managed with ranitidine, domperidone and comfort milk. DS is bad! We started on one milk then gaviscon terrible, referred to paed and started ranitidine and nutramigren milk worse than ever after 2 days, swapped to comfort milk is slightly more settled but tummy issues gurglings, bad wind and poohs! We aren't sleeping maybe 4 hours a night each. DS won't lie on his back and we are at wits end! I was thinking nutramigren ok for tummy issues but reflux terrible as so thin , no mucas or snotty nose. Comfort milk and the wheezy and snotty nose back! Next step stay down milk ! Don't want to keep messing about with milks! We are thinking private referral but don't know if it will help! Anyone any ideas or what worked for you??!

herecomethepotatoes Fri 15-Apr-16 16:11:39

We had (and I don't want to get too technical smile) an x-ray type thingy with photos where our son was -given force-fed a nasty drink which showed reflux immediately. The X-ray-type photos were taken every 20 minutes for a few hours, I think, but showed the reflux in the first two 'photos'.

Domperidone solved it, although the minimum dosage was upped to the max for his age (and I think above it, according to the instructions on the packet) before it worked. All according to the paediatric Dr, of course.

This was private so we could be pushier, perhaps, although the results are the same. We just got nicer coffee whilst waiting for the results.

Good luck!

DoJo Fri 15-Apr-16 16:16:35

Has the paed said they can't do any more? How many times have you been back?
Both of mine have had silent reflux, and we have just been relentless about going back when things haven't worked - my oldest ended up on omeprazole which worked for him, and my youngest is managing on the highest dose of ranitidine allowed. But it took a good few visits to get the balance of meds right in both cases so perseverance is always a good thing.

herecomethepotatoes Fri 15-Apr-16 16:19:48

Sorry, been down to the medicine cabinet to check. We had omprazole gel (came as granules in a sachet). Domperidone was an entirely different problem!

Onthedowns Fri 15-Apr-16 16:22:18

We have been twice but put ball in my court with the milk! Then thry said they grow out if it!! My dd did but this is different league, plus milk costing us a fortune!!

herecomethepotatoes Fri 15-Apr-16 16:33:36

I suspect that the 'grow out of it' is the difference between NHS and private.

Is it affecting his growth?

Elizabethtailored Fri 15-Apr-16 16:34:13

There is a purer form
Of nutramigen called Puramino. This is amino acid based and hydrolysed so basically nothing to react to. Allergies and reflux often go hand in hand.

I would suggest omeprazole. Ask for the gastro resistant capsules which can be snapped open and have teeny little dots of white pills in which can be put in mouth and washed down with milk. The soluble ones are useless as never probably dissolve and then you are messing about with syringes.

Onthedowns Fri 15-Apr-16 16:37:11

No he's putting on good weight but he should be going 4 hours! When's he's settled he will go 5-6 hours but that was two weeks ago. DDs was managed well but he's is just horrendous nothing we are doing is really working either reflux worse or tummy problems worse. We have follow up in 3 months but was back within 2 days after nutramigen made him so bad. Since last night comfort milk just seems to have upset tummy! At our wits end with sleep one of us has to sit up and do shifts he will only sleep upright!

Elizabethtailored Fri 15-Apr-16 16:41:31

Where are you based? Can recommend someone great in London.

herecomethepotatoes Fri 15-Apr-16 16:50:15

I only have first-hand experience of private health-care where money talks but, from what I do know, pester, pester, pester and don't give up until it's sorted.

Tried ompeprazole for your second child?

SouthDownsSunshine Fri 15-Apr-16 16:58:19

I suggest pushing for alternatives to nutramigen, as some babies with milk allergies will react to it. My dd had reflux which ranitidine solved, and no dairy (I was breastfeeding - but formula would result in projectile vomiting).

Onthedowns Fri 15-Apr-16 17:47:42

Thanks we have bupa so tempted to go private but wary of upsetting his tummy! Based near Brighton on Sussex coast. The paed we saw said very small percentage of babies have milk allergy and these hydrologised formulas are given out to often! I think maybe one would work but need to be thicker to help stay down! As he's snotty again I would assume milk isn't agreeing

Middleoftheroad Fri 15-Apr-16 18:03:34

Milk thickener. It saved us all! We were in a situation where we had tried the usual yet after months of sickness and agony we were fed up. I researched a milk thickener used in US sorry cant recall name and doc agreed 2 try as hospital had exhausted all other. We mixed powder into his bottle milk and created a thick shake. It was like a miracle. Sure it took ages to consume but it saved the day and i cant recommend enough. I got fed up of people suggesting gaviscon and ranatodine and meds. None worked. People would say "oh my baby has reflux but a bit of baby gaviscon worked" i think watching your sicky newborn writhe in agony and unable to eat sleep or rest because of severe reflux and be seriously underweight is just so hard. Please try my suggestion..that was 10 yrs ago hope moved on by now smile

Middleoftheroad Fri 15-Apr-16 18:05:40

The omeprazol excuse typo didnt work for us. No meds did but physically thickening the milk rather than tiny drops of meds worked. We were also on Nutamagen milk.

brittabot Fri 15-Apr-16 18:22:03

DS2 had silent reflux, but was 90th percentile so dr was reluctant to give drugs, and I wasn't that keen but desperate for sleep!

We put the cot mattress on a slant which helped a bit, and the discovered if I held him upright 30 mins after a feed I could then lie him down. And once he could roll I put him down on his side which helped enormously but was frowned upon at the time. Probably still is but worked for us.

Mytummyisnotatrampoline Fri 15-Apr-16 18:25:54

DS had both regular and silent reflux. It was horrific-bottle/boob refusing (he gave up milk entirely at 5 months) and the symptoms were horrible to watch: screaming, writhing, vomiting etc. The most he ever slept at a time until he was medicated was 50 minutes.
My GP was awful. Essentially thought I was just a panicky first time mum. I eventually saw another GP and took videos of DS vomiting and writhing in pain, and sobbed until I got a paediatric referral. The videos showed him screaming and writing in his sleep-how anyone could have said that was normal is beyond me!
Started with reflux milk and ranitidine which was great until it stopped working. He was then prescribed an adults dose of omeprazole which I dissolved in warm water and "forced" him to take on a spoon. He took this until just after his first birthday.
As a result of all of this, DS has real issues with food and textures. It's got infinitely better as he's got older but for a year all he would eat was porridge, pasta, yogurts and fruit pouches.
I'd go back to the GP and ask for a referral. Your GP can prescribe ranitidine and that will tide you over until you see the consultant. It's an antacid and does no harm to kids, so if it turns out it's not reflux it won't do any damage. Be forceful-one of my biggest regrets is that I let it go on for months as I didn't want to question the GP as she "knew best".

sharonthewaspandthewineywall Fri 15-Apr-16 18:31:36

My son has CMPI which was causing his reflux. He also had various other symptoms though, all of which have improved vastly since being on aptamil pepti. The CMPI could be making the reflux worse but if all other symptoms have improved I would suggest continuing with the hypoallergenic milk but getting some carobel thickener, boots have it, if not in stock they can order it in for you.

RosieAndCharlie Fri 15-Apr-16 18:46:12

Definitely get some Carobel thickener to mix with the nutramigen - made a big difference when my two were at their worst.

Elizabethtailored Fri 15-Apr-16 18:46:27

I would see another paediatrician. A gastro paediatrician as I think that is utter bollocks. Anyone who really knows about reflux knows this is not the case. Keep pushing. If you can get a referral I would get on a train and go to see Muftah Eltumi at The Portland.

Onthedowns Fri 15-Apr-16 19:22:54

Thanks all I have videoed his night time writhing, his cot is raised but he won't lie on his back at all! I asked s out carabel at referral and was told not to do too many things at once! Ranitidine doesn't seem to be helping but only 4 days! The sleep is killing us all he doesn't rest either as wakes up screaming! It's so frustrating getting anyone to take it seriously!

Onthedowns Fri 15-Apr-16 19:26:25

How quickly did you see improvements with what works? Ian not sure how long to presever with things?

arghhythu Fri 15-Apr-16 19:30:03

Formula changes take a while to have an effect!

DD (9 weeks) is on Neocate with Carobel and Lanzoprazole. Still not under control but better than it was! Neocate is as hypoallergenic as it gets but had to fight to get it prescribed. Three weeks to see full effect.

Passmethecrisps Fri 15-Apr-16 19:31:31

My dd had cmpi and gerd. At 4 weeks old she was hospitalised as she simply refused to eat all.

She got ranitidine, domperidone and gaviscon infant. She moved on to omeprozole and carobel after there was a shortage of gavison.

We found an almost immediate difference when using the milk thickener. Within 24 hours certainly. Then when she moved to omeprozole again it was a complete game changer

Onthedowns Fri 15-Apr-16 19:33:05

The paed told me that 2 days for milk if making any difference!

arghhythu Fri 15-Apr-16 19:35:21

That's crap! You have to give it at least 14 days but three weeks is about right. Is your Health Visitor any good? Mine got me the Neocate prescription from the GP.

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