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Silent reflux - seeing a paediatric gastroenterologist

(18 Posts)
Craftycakey15 Mon 23-Jan-17 20:23:48

My baby is 11 weeks and has silent reflux, diagnosed at three weeks. She is on the max dose of ranitidine for her weight and still unhappy with symptoms flaring up again. She takes lactose free Aptimil but I suspect this still isn't right for her either. We have made an appointment with a paediatric gastroenterologist and I would like to hear from anyone who has been through it. What are the best questions I mustn't forget to ask? Can I expect any kind of tests to be undertaken? Any advice would be appreciated! Thank you.

GraceGrape Tue 24-Jan-17 00:17:20

I saw one with DD1. He was an expert in infant reflux. For my DD, he didn't order any tests, just asked lots of questions about her symptoms, feeding habits and weight gain. He did examine her, but minimally.

I would separate your questions into the use of medication to treat her current symptoms, which is your more immediate concern, and questions about possible allergies/intolerances.

The next step up from ranitidine is Omeprazole so I would ask about this. It is generally very effective. The only trouble is that it is a pain to administer to babies as you have to dissolve them and administer the appropriate amount by syringe. The only really suitable brand I found were Losec MUPS as the others didn't dissolve properly. If your daughter's symptoms are very severe, they could decide at a later date to examine her oesophagus, but I'd say this wouldn't be a consideration at her age.

Secondly, reflux is often related to an allergy or intolerance of Cow's Milk Protein (not lactose - it is very rare for a baby to be lactose intolerant). Allergies (as I understand) tend to have a more immediate reaction and often come with issues like skin hives/eczema or breathing problems. Intolerances are more related to the digestive tract, so it's worth asking their opinion on this. If it is a problem with Cow's Milk and you are formula feeding, then you would need to try either an extensively hydrolysed formula (we tried one called Pepti Junior but DD didn't get on with it), or a completely cow's milk-free formula such as Neocate or Nutramigen.

We were told that the only real evidence was an improvement in symptoms. DD1's symptoms did improve with Neocate, although she was still a bit sicky. We were lucky in that Ranitidine completely took away all pain for her. DD2 was less sicky, but needed Omeprazole for silent reflux.

Hope some of this is helpful and your appointment goes well.

FuckOffDailyMailQuitQuotingMN Tue 24-Jan-17 00:27:21

Did they try gaviscon?
At 11 weeks it is unlikely that they would do any tests - sometimes they do a ph probe but many doctors aren't inclined to do them if it's clear that the baby has reflux.

I think the most important thing is getting a further treatment plan in place and then knowing when the follow up will be. It can take time to be the right combination of food/medication and practical supports in place to get the reflux under control.

If her weight is good and she is gaining and isn't failing to thrive then they will be even less inclined to undertake tests.

Hope she feels better soon.

Also, you might google the nice guidelines on reflux in infants to understand the treatment options and the pathways that are taken. Reading this can also help you to formulate your questions in advance.

Craftycakey15 Tue 24-Jan-17 11:37:38

Thank you for your replies. gracegrape why did they give you the hydrolysed one and not the one free of cows milk? Did they not think she had cows milk intolerance?

GraceGrape Tue 24-Jan-17 11:49:01

The hydrolysed one is a first step - the milk protein is so extensively broken down that the body is not supposed to recognise it, so it does help with cmpi. Also, it is cheaper than neocate so as it is often a long-term prescription, they prefer to try that first. The trouble is that it is very runny which didn't suit my sicky dd, even though we thickened it. Have you heard of carobel? It thickens formula so it stays in the stomach better. It's better than Gaviscon because it doesn't cause constipation. I used to get it over the counter.

FuckOffDailyMailQuitQuotingMN Tue 24-Jan-17 11:52:30

We had the neocate for my DS, it did really make a difference. The hydrolysed one might have made a difference but we were never given it to try.

Craftycakey15 Wed 25-Jan-17 12:36:02

Hi there. We were prescribed Althera which is hydrolysed and it looks watery. I asked about thickeners and the dr said they can cause intolerances too. We started with the last feed last night and baby was ok. This morning she was crying and straining on winding as usual! Why? Then this last feed it took me nearly an hour to feed her and get her to have a reasonable amount (also quite normal for us). I don't think she doesn't like it but wonder if I need a thickener. How does it help?

marmite157 Wed 25-Jan-17 12:59:44

Hi crafty,

My DS is not nearly 7 months. But between 2 and 11 weeks were terrible for us with silent reflux. after multiple trips to the gp, children's hospital and prescriptions for hydrolysed formula, gaviscon and ranitidine which did nothing for his silent reflux I was at breaking point and decided to stop all the medications and follow my instincts, we switched to aptamil reflux and regurgitation formula and we never looked back. Feeding time was enjoyable and relaxed again, he slept better and was generally happier to be alive lol.

Ps if you do try it you need fast flow tears as the milk is thickened and it won't go through a slow flow teat.

Good luck, hope he feels better soon x

SofiaAmes Wed 25-Jan-17 13:07:38

My dd had silent reflux which was diagnosed by her pediatrician in the USA (completely missed/ignored by UK gp). She was prescribed a stay down formula called Enfamil A.R. She had been exclusively bf until then and we added a bottle a day of the Enfamil AR. It helped a lot and she needed no medications. We also gave her a lot of tummy time and put her to sleep on her tummy as it seemed to be the only position where she was comfortable. It gets much better when they start solids.

Craftycakey15 Wed 25-Jan-17 17:04:50

Thanks for your replies. I don't know what to do. My baby hasn't eaten much, as usual, today. It took an hour for her to take 120ml three times today. She has cows milk protein intolerance so I don't dare give her the aptimil reflux milk to try. She sleeps fine. Her crib is tilted. She doesn't like tummy time at all. I thought that was a reflux thing.

FuckOffDailyMailQuitQuotingMN Thu 26-Jan-17 16:04:26

crafty you haven't commented on her weight or size? Do you know what centiles she is in?

Does she have failure to thrive?

I know how difficult it is when the refuse to feed - have you noticed anything that encourages feeding at all? Such as sitting in a specific chair, having the room quiet, having music on, it might sound strange but if feeding is stressful for her then finding the most accommodating environment for her might help her to relax.

Also, the thickener can help 2 ways - if she has any difficulty with swallowing then a thicker formula is easier to swallow and 2ndly thicker formula is less able to be regurgitated back up into the esophagus.

Keep working to get a good feeding routine down where both you and she feel relaxed and calm. It's not your fault that this is happening, keep working to help her by reading and trying different things.

Maybe someone else can comment - it's been a long time since I've had a refluxy baby.

GraceGrape Thu 26-Jan-17 21:24:54

It's also been a while since my babies but os it worth trying a thickener anyway? It doesn't sound like things could be much worse. The paediatrician who suggested carobel to me didn't suggest it caused intolerances, but this was 5 years ago so things may have changed. I seem to remember it was made out of some kind of seaweed! I think there are other brands too. You do need a variflow teat for the bottles.

GraceGrape Thu 26-Jan-17 21:26:45

Posted too soon. Otherwise, contact the paed and explain the difficulties. Maybe ask to try nutramigen or neocate.

Craftycakey15 Fri 27-Jan-17 19:47:04

Thanks for sharing. We use mam bottles and there is no variflow teat on them. We just moved up to size 2. Why do you need variflow? What benefit does thickener bring? Does it also change the taste?

FuckOffDailyMailQuitQuotingMN Fri 27-Jan-17 20:04:34

I answered about thickener upthread at 16:04

GraceGrape Fri 27-Jan-17 23:16:58

Yup, as said thickener helps the milk stay in the stomach rather than come up as reflux, so preventing the pain.

GraceGrape Fri 27-Jan-17 23:49:49

Also, the variflow teats (with a y-shaped hole) are necessary as otherwise the milk is too thick to get through.

Craftycakey15 Sat 28-Jan-17 10:11:56

Sorry I was tired when I wrote last and didn't read back the whole thread. I don't want to change our bottles to get the variflow test so may have to pass on thickener. She doesn't have trouble swallowing at present.

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