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Permalink Reply by Anna Curtis on February 4, 2012 at 21:51

he will scream, cause he is in pain

until pain is being dealt with, it won't get better

he probably struggles to sleep or deson't sleep at all

doesn't feed well

etc

you need to get him on good medication (omeprazole is the only one) and get him on the right dosage

keep him always upright - including sleep time, pushchair and nappy change

gaviscon powder

consider food intolerances which are very common with reflux - milk, soya, egg and wheat are main culprits

if breastfeeding, remove all from diet

if bottle, ask for neocate formula - gp can prescribe it

my baby only got better once on neocate and on correct dosage of omeprazole

once weaned, we had to avoid all allergens and fruit in the diet

good luck

xx

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Permalink Reply by amanda on February 4, 2012 at 22:23

Thak you for the advice, Noah has only been on ranitidine for 4 days and we are unsure how long we should contine with this but so far he has not shown any improvement. My understanding is that Omeperazole is a different group of medications (Proton pump inhibitors) which we are more than happy to consider very soon!

He is prescribed Pepti junior formula - a lactose free milk - because initially the dr's thought he was lactose intolerant - his parents decided to keep him on this milk because he has had his milk changed 4times in 8 weeks.  We will explore the other formula option that you suggested as we have never heard of it. I am trying to support my daughter and son in law in researching this diagnosis as they are currently exhausted, many thanks for all replies, amanda.

i have joined th

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Permalink Reply by Sara B on February 4, 2012 at 21:59

Hi,
It is worth reading the food intolerances thread above, it expalains a bit where reflux can come from. I will also bump another thread for you called how we would treat reflux with the benefit of hindsight. In the short term, get started on a refferal to a gastro peadiatrican, and be very very supportive without interfering. Your child and their partner will need all the help they can get. X

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Permalink Reply by amanda on February 4, 2012 at 22:19

Thanks Sara, I am trying to help them the best I can, thanks for the thread we are all going through a very sharp learning curve. Noah has been seen by a peadiatrician Monday of this week and started on Ranitidine but so far he does not appear to be any better.

Is this normal 8-12 hours of screaming? I have taken on board what Anna has said about Omeperazole but we need to think about how long we should continue with Ranitidine as he has only been on it for 4 days.  Thanks for replying we all feel so desperate, Amanda.

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Permalink Reply by Beth on February 4, 2012 at 23:08

Hi Amanda. Before my little one was on Omeprazole and an amino acid formula (he is cows milk protein intolerant) he used to scream for hours. Poor baby was in pain. Although we're having a rough time at the moment (teething doesnt help reflux) they are bouts that pass rather than hours of endless pain for him. 

Once your grandson's pain is managed things will get better. The best thing you can do is ask questions on this site (very knowledgable ladies!) and do some research so you understand more about reflux and can ask the right questions at docs/hospital. 

You sound like a lovely, caring grandmother X 

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Permalink Reply by amanda on February 4, 2012 at 23:23

Thanks Beth, this is such a steep learning curve! I know this site will be invaluable to us beginning this very very difficult journey. Amanda.

I hope your little one gets some relief very soon.

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Permalink Reply by Sarah on February 5, 2012 at 8:27

Dear Amanda,

Welcome to Little Refluxers. I hope you will find the site a source of great help and support to you and the family. And may I say, how wonderful to have a granny taking such an active interest in helping her grandson through such a difficult time.

I realise several others have made some excellent suggestions but thought it might be useful for me to offer some reassurance to you. I have a medical background and 2 severe refluxers so have a fair bit of experience to share.

I thought it might be useful to share a few statistics….

More than 70% of infants reflux. For the vast majority, this is simply seen as “spitting up” and relates to the uncoordinated movements in an immature gut including weak/untimely closure of the lower oesophageal sphincters, uncoordinated opening of the pyloric sphincters, immature peristalsis and so forth. These things simply improve as the infant matures. Most “grow out of it” between 3 and 9 months and never look back.  It is completely normal.

Approximately 5% of these “refluxers” have associated discomfort with the reflux. Again, for the vast majority this is a normal physiological thing, but the ‘splashing’ of the acid stomach contents back up into the oesophagus causes a burning sensation and can in fact do real damage. These infants benefit from medical treatment.  Usually GPs will start with Gaviscon – the theory being that this forms a layer on top of the stomach contents and lessens the volume that refluxes. In my experience this rarely does anything though I do have friends who swear by it. The next step up is acid-suppression, and rantitidine is the first choice because it is licenced in babies and has relatively few side effects. There is some guidance on the dose rate available on this site, but you do need to be aware that by 8 weeks, some “soreness” will already have occurred in your grandson’s esophagus and it will take at least 2 weeks before this has had the chance to heal and the ranitidine has had the time to show any effect… You’ll see in everything that I write, that unfortunately time is going to be the primary factor. 

Now…. Back to this 5%. Again - about half of these babies will simply grow out of the reflux, and once you get the acid under control with medication, it’s simply a matter of waiting it out.   Most will improve by 3 months, still more when they start sitting, others when they start weaning, and a small minority will have continued reflux over the age of 1. Gastroenterologists describe 2 years as the age when reflux should be outgrown fully so don’t be surprised if your paed is not taking things overly seriously yet!

However, for the other half of this 5% there may be an underlying cause of this reflux. For the majority this will relate to a Cow’s Milk Protein intolerance – nothing to do with lactose although the damage to the mucosa from the inflammation caused by the CMPI can result in a temporary secondary lactose intolerance in much the same way as you yourself might get after a bout of gastroenteritis. Primary Lactose Intolerance is extremely rare and your grandson would have been very poorly indeed from the moment he was born if this was the case. So…. For CMPI babies, eradicating cow’s milk from the diet makes all the difference.  Pepti is a hydrolysed formula – the milk proteins have been very broken down so as to make them unrecognisable – and our dietician says around 80% of CMPI babies will be absolutely fine on this formula. Again, it takes a good few weeks to see the benefit of the change in formula (it’s normal for an upset digestive system for at least a week after a change) so you do need to be patient with the new milk for a good couple of weeks.  Neocate that the others have mentioned is an amino-acid formula and may be appropriate of your grandson is continuing to show signs of intolerance…

A tiny minority of that other 2.5% will have other issues such as hiatus hernia, H Pylori, structural abnormalities, Multiple Intolerances, EGID, but I hope you can see now that this is very rare.   The problem with this forum is that the majority of people join at around the time their baby is 6 weeks old, read some posts, and then disappear again when their baby grows out of the problem.  But those with the tiny minority remain, and become “oldies” who post because they are STILL struggling – so it is a very skewed population and you tend to get a skewed viewpoint.

So… here is the thing.

No, it is not normal to cry for 8 hours a day and I have so much sympathy for the horrible time that your family is going through.

Can you describe the pattern of refluxing? Does he vomit? Is it related to when he has a feed or the period afterwards? How often is he feeding? How much milk is he taking?  Is there any blood or bile in the vomit?  Is it projectile?

Are there any other symptoms other than the extended crying? For example, what is the posturing like? Can you describe his nappies?

Are you already doing all the housekeeping things???? Nappies a size bigger - nothing tight around the waist ever (babygros are best) –keeping upright for at least 30 minutes after a feed – very thorough winding – always sleeping the baby on a 30 degree angle – propping changing mats etc. There are loadsof little things like this that can help.

Sorry for the zillion questions!

In short, my suggestion would be to give the Pepti and Ranitidine combination a good 2 weeks to take effect (what dose of ranitidine is he on?) with the knowledge that there is plenty of scope for increasing the levels of medications (I can think of at least 6 other medicines that can be tried in varying combinations if you are getting nowehere) and for changing the formula.

There are some excellent websites I can recommend for information – I’ll post when on computer rather than phone - and I know Jenny will back me up completely when I recommend a book called Colic Solved (don’t be put off by the title).

I hope that reassures you a little.

Sarah

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Permalink Reply by Jenny Rawling on February 5, 2012 at 9:49

Hi Amanda - welcome to LR, and how fab that you are here trying to help your grandson. Informed family support makes such a difference during a very difficult time. I can't think of a single thing to add to Sarah's extremely detailed reply, except to second the suggestion that you buy a copy of Colic Solved for baby's parents. It's by a gastro-paed called Dr Bryan Vartebedian and its fantastic on reflux and cows milk protein intolerance, diagnosis, investigations, treatments. Reading that would be a really good start for them when they probably don't have time or energy to trawl the internet. Available from Amazon, and although I ought to be on commission for the number of times I've recommended it, I'm not.

Hope you see some improvement in your grandson very soon, Jen xx

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Permalink Reply by amanda on February 5, 2012 at 10:01

Thank you Jenny - Next stop Amazon, Amanda. 

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Permalink Reply by Jenny Rawling on February 5, 2012 at 9:49

Sarah, I'm totally in awe that you wrote all that on your phone! You rock!

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Permalink Reply by Kiwi Lover on February 6, 2012 at 13:40

Me too! If I tried to write that much on my phone it would be complete nonsense!

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Permalink Reply by amanda on February 5, 2012 at 9:59

 I don't know what to say except thankyou thankyou thankyou ! My daughter phoned me at 5:30am very distressed saying that Noah had ben crying for 14hrs and was totally exhausted, we were on our way over and she called to say he had fallen asleep and that they  too were going to get a few hrs. I am heading over to them now and we will sit down and digest all of the information that you have given us and reply real soon.

I need to be with them when I give you any information to ensure it is accurate, I really don't know how to thankyou Sara from the bottom of my heart.

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