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Infant feeding

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Original poster

Gaviscon & Silent Reflux , at my wits end

26 replies

hodgepodgepanda · 30/04/2015 16:34

Took 5 week old Ds to see the gp yesterday because he has been a screaming gibbering wreck since the weekend with such symptoms of silent reflux such as been sick but swallowing it instead of spitting it out , going rigid & not able to take more than ounce of milk at a time .

GP says he may have a bit of reflux n gave us some Gaviscon which worked straight away (Ds took 12oz in 3 hours with no fuss) but today he is back to the constant screaming & it's obvious he is in pain despite the gaviscon , should I give it a few more days or should I take him back to the GP tomorrow ?

Also it seems to have turned his poo black Confused

OP posts:
ChocolateBiscuitCake · 30/04/2015 17:19

Gaviscon only thickens the feed so it moves up the oesophagus less. The acid still burns the throat (think of heartburn in pregnancy!).

It is the first step in the road of silent reflux... Next step is ranitadine (an antacid) and after that, omeprazole (stronger).

A lot of silent reflux is related to a cmpi so worth changing to a low/no lactose formula. Neocate is the most dairy free but is VERY expensive, so you will want it in prescription.

Good luck - I have had three children with varying degrees of silent reflux and dc4 looking like she might have it too! It's exhausting!

Original poster
hodgepodgepanda · 30/04/2015 19:24

At first the GP suggested I go to the shop and by a lactose free milk to try & the he changed his mind , he didn't seem too Willing to give milk on prescription .

What lactose free milks are their if you don't mind me asking

OP posts:
ChocolateBiscuitCake · 30/04/2015 19:40

Am currently breastfeeding so a bit out of touch - dc2 had dairy free milk.

I think Aptimel do one and there is nutramigen. They all have reduced lactose. The only one that had 0 lactose was the neocate. It is £25 a tin! I bought one over the counter (I pretended I had run out) and dc2 drank a whole bottle in no time (having previously taken 1-2oz a feed over a very long time). I then saw a private paediatrician who agreed to prescribe it (along with meds - eventually omeprazole) and he wrote a letter to the gp who then gave me an nhs prescription.

Silent reflux is generally poorly understood by gp's. I have always had to be extremely proactive to get help.

Good luck x

Original poster
hodgepodgepanda · 30/04/2015 22:33

Thanks & Shock at the price of it

OP posts:
Stubbed · 30/04/2015 22:38

Get a referral to a paed. Ours was brilliant (as was the GP to be fair) we got dd sorted with proper doses of meds. Please go, reflux is miserable and will prob get worse before it gets better :-(

Elletorrito · 30/04/2015 22:45

Hi. We started on gaviscon. It takes about 10 days to really have an effect. It didn't completely resolve the reflux so we went back after 2 weeks and were prescribed omeprazole which took another 2 weeks. Keep going and keep an eye/ time the screaming fits. They improved approx 70 % just with th gaviscon. Good luck

momtothree · 30/04/2015 22:49

Hi raise their head above stomach at all times - towel under matress etc - works wonders

Original poster
hodgepodgepanda · 30/04/2015 23:46

My GP told me to come back tomorrow if their was no improvement , is it too early to go back then ?

Do I raise the mattress in his crib or the crib itself though I'm not sure how i could as it's a gliding one Confused

OP posts:
ChocolateBiscuitCake · 01/05/2015 04:44

Go back! If he is keen to help, take the help. As a pp has said, the meds take time to work so better to get started ASAP.

Original poster
hodgepodgepanda · 02/05/2015 00:29

I went back as Ds was worse , I saw a different GP & he treat me like a brainless idiot and told me to just persevere as it will go away eventually (meaning when he is older ) and their is no help out their for reflux as they don't know what causes it or how to treat it so basically he expects me to suck it up and not give a crap that my Ds is in constant pain every time he feeds Angry

So my poor Ds has to suffer until Tuesday when my GP is open as any other doc will prolly fob me off as well , I just hope he doesn't have another 5 hour screaming session because of 1oz of milk !!!

OP posts:
momtothree · 02/05/2015 07:39

Put a towel under the mattress just an inch will raise his head above his stomach - let me explain - i saw an american baby program - baby had same symptons as DD 2 years previously. Babies have a. mussel at the top of their stomach that isnt closed properly which leaks the acid and burbs them - this will close naturally at 6 months - helped by baby sitting up more. So every time you lay baby flat you cause the acid burn. Your baby will be exhausted by lack of sleep and pain - as will you!! Put a pillow under then for a nappy change - sleep in a more up right position - i will put money on that baby sleeps well in a car seat or lifted up pram? Let me know how you get on.

momtothree · 02/05/2015 07:40

As a side note DD lucky to still be here after 6 months of sheer hell.

HaveTeaWillSurvive · 02/05/2015 08:05

So Angry at the second GP, poor DS was in awful pain with reflux for the first few months till we got ranitidine, the changed into a different baby overnight. Gaviscon didn't work for us, constipated him and I was EBF so a total faff. Sure you're doing it anyway but keeping upright for at least 30 mins post feed did help. Good luck for Tuesday.

Waffles80 · 02/05/2015 08:08

It's just not true that nothing can be done about reflux - your GP is a moron.

You don't have to put up with your baby being in pain.

Demand a referal to a paediatrician. We did - our twins refused to feed and GP was pretty useless. I just kept saying "this isn't right / we need to do something / refer us to the hospital" for the duration of the appointment. Film a feed to show GP if that might help.

Paediatrician prescribed ranitidine which worked in a week.

ChocolateBiscuitCake · 02/05/2015 08:28

Agree with filming a feed.

As I said earlier, many gp's just don't understand/sympathise.

not sure whether you have private health cover or are able to self pay for a private paed? If you can and are London based I can recommend someone.

A private paed will then wrote to your GP - the gp then has to follow his plan and it will be nhs funded.

It's a frustrating road. In the meantime, I would try a different formula.

My worst silent reflux baby fed best in a baby bjorn bouncer chair... He liked the positioning and I could bounce gently throughout the feed. May be worth a try if you have one?

Thinking of you

bakingtins · 02/05/2015 08:47

Wedges and slings are your friends, try to keep him elevated as much as you can. Car seats can make it worse as they tend to crunch over putting pressure on the abdomen but bouncy chair can be helpful.
CMPI is cows milk protein intolerance. lactose is milk sugar and primary lactose intolerance in babies is very rare. You can get secondary lactose intolerance if the gut is inflamed. If you think he has CMPI you need a milk where the protein is hydrolysed to break it down e.g Aptamil Pepti, or made from individual amino acids e.g. Neocate.
Black poo is concerning as digested blood ( coming from high up the digestive tract) can make poo very dark. Infant Gaviscon was useless for my son, just made him constipated. Ranitidine helped a bit, Omeprazole helped a lot, together with restricted diet as he was dairy and soya protein intolerant.
The book 'Colic solved' by a gastro-paediatrician Dr Vartebedian, is very helpful, despite the stupid title, and has a lot of information about reflux and CMPI. You need to inform yourself because you will get a lot of fobbing off. The support site Little Refluxers also v helpful.
We paid to see a consultant paediatrician privately who prescribed the Omeprazole. It is not licensed in babies so GP may be reluctant to prescribe it, but ranitidine is licensed and is often useful in milder cases.
Keep advocating for your baby, it is rotten being told you are neurotic when you know something is wrong.

Original poster
hodgepodgepanda · 02/05/2015 09:11

I'll try and answer everybody

Can't go private unfortunately .

I keep Ds propped up as much as possible and he also naps on his front dure in the day (with me watching) which seems to help him .
He had about an hours sleep last night as I propped the crib matress up but he just wouldn't settle after that so I had to take him in the bath to calm him down which worked a treat until we got out.

Going to get him some different milk today though not sure which one so any ideas on that would be great Smile

Hope I answered everything

OP posts:
bakingtins · 02/05/2015 13:44

Two types of reflux milks. First type is thickened, tend to be marketed as anti-reflux or 'AR' (added rice). You can also add Carobel, a thickener, to your normal formula, but not with Gaviscon also. Check with pharmacist about gaviscon with any of the thickened milks.
The second category are the CMPI milks, which are either hydrolysed to break down the milk protein e.g Nutramigen 1 or are made from separate among acids e.g Nutramigen AA, Neocate.

I wouldn't immediately suspect CMPI in such a young baby unless there is a family history, or you also have other signs of intolerance (wheeze, snuffles, skin lesions like eczema or red ring round anus, horrid mucussy poo) it underlies half of reflux cases where it persists beyond 12 weeks, but to a large extent refluxing is normal for most babies less than that and the majority will not have issues with dairy. That's why GPs don't take it seriously, most of them do outgrow it without treatment. It makes it difficult if you have a baby towards the severe end of the spectrum, but just keep pestering them.

fraggle84 · 03/05/2015 08:32

I'd go back and ask for an urgent paediatric referral it should be within a week.

Ds has this at 3 weeks and we decided to pay for a private appointment, we were seen the same day and was £180 which is a lot but for us it was completely worth it

He prescribed her neocate and onepramzole And changed her to Dr brown bottles which has made a huge difference

If you can I'd go private if you can get a paediatric appointment soon as we did and as neocate is on prescription we save on formula and put that saving towards her bill

Where are you? One option is to go to a big hospital with a paediatric a&e and see what they say, I had to do this with ds as the GP wouldn't send him to a paediatrician and we knew there was something wrong, he ended up being diagnosed with a cows milk allergy and the GP had been putting him on gaviscon which was just keeping the cows milk in his system making him very ill

fraggle84 · 03/05/2015 08:36

Also the out of hours GP can prescribe certain milks ours gave dd aptimel pepti which helped until we saw the paediatrician, might be worth giving them a call

TisILeclerc · 03/05/2015 08:48

Oh man this makes me so cross. Three of my four dcs had it so by dc 4 I wasn't taking any nonsense. My gp referred me to the hospital very quickly but the first paed I spoke to told me I was overfeeding ds and that he wasn't willing to prescribe anything over gaviscon as he couldn't be sure ds was in pain as he wasn't saying he was Hmm I reported him immediately (well after going a bit loopy as ds was 7 weeks and highly unlikely to say he was in pain and would be refuse to prescribe something to an elderly person who could no longer verbalise pain?)

Within a few days we were seeing a paediatric gastroenterologist who kept ds on her list for eighteen months. We had a variety of different lactose free milks plus ranitidine followed by omeprazole and domperidone.

Don't accept poor treatment. You are your child's only advocate Flowers

Original poster
hodgepodgepanda · 03/05/2015 09:04

I have taken Ds off the gaviscon as it seemed to be causing him a lot of pain & have been using Colief since Friday & it seems to have made a difference as he isn't in anywhere near as much pain as he was before & with the gaviscon .
Although I forgot to put it in his night feeds through sheer exhaustion so he was in pain again which I feel terrible about but it proves he needs it iyswim .

I'm not near a children's A&E just one small hospital & definitely can't pay to go private as much as I'd like to .

If the Colief is working does that mean it's an allergy ?
He has no rash etc

OP posts:
fraggle84 · 03/05/2015 10:17

Colief will be helping with trapped wind, it does sound like cmpi with reflux, id ring out of hours GP and ask for a prescription for a formula

Original poster
hodgepodgepanda · 03/05/2015 10:32

I don't think he has trapped wind he is burping for England .

The only ooh gp is the wall in centre would they do the prescription ?

OP posts:
fraggle84 · 03/05/2015 11:00

Yes they can only prescribe certain formulas, the ones for more severe reactions like neocate I'm pretty sure needs to be from a paediatrician

They can definitely prescribe aptimel pepti