8 week old - silent reflux. Started on infant gaviscon

[purpleviolet1]

Ds will be 8 weeks tomorrow and is a good weight of over 10lbs now. He was born at 37+5.

He is formula fed - cow and gait comfort (since 4 weeks) as we initially thought he had colic. He has had the following symptoms:

• distressed during feeding
• approx 1-1.5 hours after feeding he cries and cries. Very rigid body and very difficult to settle.
• gulping noises up until next feed followed by shrieking
• wheezing, clearing throat, grunting noises during sleep
• waking up mid nap clearly in discomfort. Not able to settle for more than 15-20 mins at a time
• sometimes bringing up milk , other times we have seen it in his mouth and then he has swallowed it
• burps regularly and passes LOTS of wind
• lots of hiccups
• congested nose (all the symptoms listed seemed to have started/ got worse after he had a cold)

On a side note he has very good head control and is very alert. Numerous people and HCP have commented on this since birth.

It appears to be more silent reflux than normal reflux. GP prescribed infant gaviscon yesterday and said to see how we get on.

So far the crying episodes are very slightly less. Don't think this medication is going to cut it but I understand it can take time so will give it until Monday unless there is further change. Only way he is settling is on his front on my chest if I'm lying down. He doesn't appear to be getting into a deep sleep at all.

If your LO had silent reflux do the above symptoms sound similar? What medications worked and how long until you saw an improvement? Any other tips?

We have got the wedge to raise mattress and keeping him upright after feeds (he is mostly in my arms now constantly anyway).

[purpleviolet1]

Thanks so much wriggley for all that advice and support. Feel like I'm at the end of my tether. It was a GP registrar I saw today and it was the first time we met. The other GP's know me really quite well (I've had major illness a few years ago) and I feel they would've taken me much more seriously. This registrar couldn't even unbutton his babygro and it was obvious she has no experience in babies!

Anyway. I've checked the BNF and NICE guidelines myself and I've calculated that 0.3ml is the minimum dose for ds weight. 1ml is the highest dose. I even asked her if we can increase the dose and she looked in the BNF and said for his weight , 0.3ml is appropriate. But after checking the BNF myself, there is a lower and upper limit. I'm going to increase the dose , probably to about 0.6ml and see how we get on. 0.65ml would be the median. I'll tell the GP I've increased it. I'm sure no one will but please don't flame me. I understand the risks.

[purpleviolet1]

He has been crying /awake for 10.5 hours straight today. And now we need to get through the night feeds! 24/7 job.

[WrigleyMummy]

It sure is!... I'm forever feeling guilty that my son isn't getting enough to attention then that my daughter isn't getting enough either....I literally feel like I can't split my self between the 2 of them fairly...it's very hard not getting a second to hear yourself think or take in what's happening..constantly on alert and on the go ...I totally understand... tell tiredness only makes it harder. Do you have any family near by that can help sometimes? Or have baby for an hour or two just to help you have a break or nap? They used to say sleep when the baby sleeps which I never did with DS...always cleaning or trying to be the perfect house wife...and I can't this I meet round as DS hasn't napped since he was 2 so...when DD sleeps he's usually wanting some play time with mummy..

If you can get a small break it may help especially if your poor boy is crying alot until things improve...I think you sound like you know what your doing re the dosage and trust your own instinct....mothers know better in my opinion than anyone else !

Is this medication like an antacid? I read nothing will stop the reflux but the meds nuetralise it so it doesn't burn when it does come up.... or does the meds thicken the milk too?

If your partner/hubby is home now maybe get a bath or kip.. every little helps when it's full on....but again trust me when I say the first few months are always tough going ...it won't always be like this Xxxx

[wineandchocolate123]

My ds is 5 months now, and to start we thought he had silent reflux. Tried a thickener (complete blank to its name!) and also gaviscon. None worked so our gp advised trying nutramigen for cmpa. We've been using it for a couple of months now and he's a completely different baby. All the silent reflux symptoms disappeared over the 1st weekend he started on it, and he hasn't had a choking episode since (we were up to about 7 a night).

I'm waiting to see what happens at his 6 month check now with regards to weaning, and trying him with normal formula (slowly introduced I think) to see whether he's grown out of it, which many babies apparently do.

Keep pushing with your doctor, and ask to see a different one if you're not happy with the outcome.

[purpleviolet1]

Thank you both. I will defo keep pursuing until things improve. Been a very distressing evening. His eyes are puffy and red from crying so much. He was even sweating at one point.

Wriggley I have been staying with my mum. Even with her helping 24/7 I can't manage to relax. I am sleeping a few hours here and there but him crying 24-7 is just so draining. With my own health issues there is no way I could manage on my own. I'll be staying here until things are more manageable. DH has been here too but works 9-5 during the day so a little limited. So with 3 of us onboard we are struggling! Don't know how people cope alone. Massive respect to you x

[WrigleyMummy]

Yeah my hubby works 6am till 6pm and weekends and it's really quite draining taking it alone....I'm really close to my mum mind you and she comes over when she can to help me out while hubby is at work...his work is really annoying me to be fair...he can't help his hours but man he's just never here it feels!

Your poor little boy... it must make it hard to get out with him too if he's so distressed all day....it's one or the worst things to deal with watching them upset and in discomfort... is anyone professionally helping you with having health issues yourself? A health visitor or anyone?

I'm sure it's hard with it all being not how you may have imagined.. I very much hope the increase in dosage helps asap... xxxx

[purpleviolet1]

Thank you ... I feel like we are in a vicious cycle of being in distress and overtired. He has not slept since 9am!He has tried to settle so many times / we've thought we've cracked it and then 5 mins later awake crying. Can't see him coming out of the over tiredness until the reflux is better though if you know what i mean.

Not sure if I mentioned before but I had major surgery to remove a tumour. I was very fortunate that it was found and removed and I've been fine since, but alongside the tumour they had to remove 80% pancreas and spleen which has obviously left my body struggling. I get tired very easily and run down, and catch every bug virus and infection there possibly is. The health visitor is aware but didn't really have much to say. The GP registrar I saw today doesn't know me or my case. One of the other GP's who I had the 6 week check with acknowledged my health issues and understood when I burst out crying when she asked how I was.

[purpleviolet1]

Posted too soon. Wow you are going it all alone, don't know how you are managing with 2 kids! I can't even imagine .. you are doing so well. It's ashame your DH can't be around more. Glad your mum is helping too. I would keep asking for help and support and taking what you can because you don't want to get so exhausted that you come crashing down. Before ds I never realised how debilitating reflux actually is. It's very common I know but this sort of severity isn't.

[purpleviolet1]

Wriggley and HL bug how are things?

[WrigleyMummy]

Sorry for delay purpleviolet...busy weekend with birthday parties to attend and family bits...(so stressful and such hard work with how Etti is at mo)

Not good... she had what I'd call a "good day" Saturday...as in we had some smile times which we've just not been getting...the yday and today she's done nothing but cry and feed....I'm sat here not on the sofa after giving up trying to do anything like open my bedroom curtains and make the bed as she's none stop cried since 5 am... I've struggled to even make my sons toast for him.. my mum's taken him to hers now but being honest and in a none mean way taking my little boy doesn't actually give me any respite...I'm still not even dressed or had a drink myself yet and to be truthful I've been feeling quite poorly over the weekend...I had Etti early by emergency section because I was rushed in with pneumonia and sepsis...she became distressed that night so had to be delivered and I've never really been able to get over it as it was just straight in to looking after baby ...4 days in hospital where I was bed bound but still having to see to Etti on my own... trying to feed and dress her ...change her nappy stuck in a bed unable to get up was the worst experience of my life thus far! And now my symptoms are creeping back...can't get out the house either when she's having bad days as I can't even get ready to get out she's that hysterical

I'm very worried about her appointment Thursday as I feel they'll tell me it's not silent reflux of get me on gaviscon and I don't want the gaviscon.. even the health visitor to said it's not that good and causes terrible constipation...so I've no idea how I'll go asking for the antacid straight away...

How is your little man getting on?? The higher dosage helping??? Xxx

[HLBug]

Hello, I think we're doing "ok". DD is not 100% all of the time, but she definitely seems better on nutramigen. I think I just need to accept that she is not going to be the chilled out second baby that I was hoping for (and that all my friends who have recently had second babies have somehow managed to get!) but we're getting some smiles and nice noises and she's the perfect size to cuddle at the moment.

Bizarrely her skin is actually worse on nutramigen- eczema has flared up this past week. I'm not sure if it's just a delayed effect from the SMA though. Still some discomfort passing wind, but it's rarely more than once per day and it's nowhere near as bad as it was. Same goes for the reflux symptoms- maybe evident at one or two feeds per day.

We've been toilet training her big brother this weekend so have been stuck inside for the last few days - going a bit stir crazy to be honest! My main stress at the moment is trying to track down nutramigen though! There is a nationwide shortage and the next shipment from the continent isn't due until later this week - I should just have enough to last until then. GP has given me prescription for Aptamil Pepti but it has lactose in it so I don't really want to switch her again

When is your next appointment with the GP or health visitor? Do you think the ranitidine is making any more of a difference now you've been on it for a few more days? I still think if you're struggling you should just go and buy some nutramigen (or something similar) from the chemist once the blasted boat has arrived and do your own trial. All the symptoms you have described are classic CMPA to me (and this is my second baby who has had this problem).

[purpleviolet1]

Wriggley, sorry to hear things aren't good. How early did you have Etti? I also had c section at 37+5 and can relate to how difficult it is to look after a baby when you can't move yourself. Your doing so well and I think you should keep going to the doctors until things get better. Sometimes you have to keep going until they finally pay attention. They probably won't give you ranitidine straight away but there is no harm in asking. If you say you had the same with your son, and that it's silent reflux symptoms (gaviscon doesn't work for silent reflux) then they may just listen. But if they don't, then go back on Monday to urgent clinic.

Hlbug - glad the nutrimagen is helping but shame about the eczema. Has it got any better?

We increased to 0.6ml on Friday night and then increased to 0.8ml since Monday and there has been a remarkable difference thankfully. Still very much having episodes but they are much shorter and less frequent now. I'm hoping things will improve further and will keep increasing to maximum dose/ push for omeprazole if needed. I actually managed to go out on my own today - to baby massage class. He was up at 6.30am and nodded off happily at 8.10am but woke crying at 8.30 and cried until We left at 9.50. I almost never ended up going and I just had to put him down crying to get myself ready. The class went well and I felt brave enough to go for lunch after but he had an episode there! This very kind lady offered to hold him whilst I chopped the bruschetta up (went to pizza express) so I could hold and eat at same time! I did get a bit anxious when he wouldn't calm down as I felt bad for disturbing other customers. He did settle for a few mins but then started up again. This went on for a while. Anyway I'm so proud I managed to get out I'm going to try not let the crying put me off going out...

Really hope things get better for you guys. Got follow up at doctors a week on Friday.

[WrigleyMummy]

Thankfully Etti was only 2 weeks early...I was exactly 38 weeks... she's a wonderful Lil so and so

You've done great getting out and it must have made you feel so much better.... I'm glad to hear things are getting a little more improved for you ....is this still the case???

I've been to Etti's 8 week check today (damn those immunisations ! I thought I'd be ok this time around after Alfies but nope hated every second of it!!!!)

GP has referred us to a paediatrician....she feels it sounds far more like CMPA than anything else.......got a prescription for Pepti 1 milk for now to try while we wait for the referral...picking it up tomorrow as had to order it in to the pharmacy...will see how we go... heard it smells bad and some babies don't take to it very well ...so seriously hoping she's ok with it... unsure how long the referral will take but it's a step in the right direction as far as checking her out... GP was really good to be fair...can't actually fault her and she listened well....

I've got to go for a chest xray tomorrow and bloods due to not being myself since the pneumonia and sepsis .....doubt they'll be much from it but again at least she's bothered to sort that...

Have you been out again since?? X

[purpleviolet1]

Oh wriggley I'm so glad your experience at the docs was a good one really pleased for you. Please keep me posted. I've heard the milk doesn't taste good but you could change her slowly by swapping a scoop of her current milk one at a time until she gets used to it. I've heard people doing this.

DS is better than before, but still having episodes. For example I fed him at 7.30 and since 8 he has been crying / unsettled. My gut instinct is that along with the reflux he gets a sore tummy too. Until he passes wind/burps and the gulping stops, he is very uncomfortable. A few people have suggested I put one less scoop in his milk as it might be too heavy for him to digest. I know the HCP advise against this though. Going to phone doc tomorrow and make an appt with a different GP for next week. Increased to 1ml (the maximum dose) of ranitidine yesterday so will have a good idea how we are by then. It's so sad because he is such a happy baby when he isn't uncomfortable. Breaks my heart (and my back) from trying to soothe him in every way I know. We haven't been out today - yesterday evening was particularly bad after we got home. He cried from 7pm - midnight and then didn't have a restful sleep all night.

[HLBug]

Are you back at the GP again today purple? Or is it next Friday? Hope you're doing ok.

I ended up back at GP yesterday with DD as, slowly but surely, some of her old symptoms are coming back. So we've now been switched to Neocate which has no milk in it at all. Just picked it up from the pharmacy - dreading trying to feed it to her later as feeds have become a real battle in the last few days.

[purpleviolet1]

Currently sitting outside boots waiting for the pharmacist to come back from
Lunch... hoping we can buy the nutrimagen ds really uncomfortable and although the ranitidine has helped it's not enough. He seems to have a sore tummy as well after feeds. Hoping the pharmacist will sell it to me..

[HLBug]

Did you get some? I think there was a delivery die into the UK yesterday so it might take a few days to get out to the individual pharmacies. Good luck!

[purpleviolet1]

I ordered it into local boots (the pharmacist didn't really have a clue) after trying a couple places but after I came home I phoned around another few boots and located one tub! Hope they will give us it though as initially the lady said you need a script, then someone spoke in background and she asked whether it was number 1 or 2 I needed. I've sent someone to go and collect so let's see...

Looking at wriggley mummy though I wonder if I should've tried the aptamil Pepti as step 1 though.

[purpleviolet1]

Managed to get some nutramagen ! Had first feed with 50% nutramagen...

[HLBug]

The Aptamil Pepti still has lactose in it - the Nutramigen doesn't. Will keep everything crossed for you

[purpleviolet1]

Ahh thank you! Is there your first baby? You have an awful lot of knowledge!

Next feed I am going to make up 4oz nutramagen and 2oz comfort. He usually drinks around 5oz but I make 6oz.

[HLBug]

Second baby - the first one had CMPA issues too so, unfortunately, I'm a dab hand! You might find he's ok with the different taste as he's still so young. Hopefully once you're on full bottles of Nutramigen you'll see a difference in a few days. Good luck

[WrigleyMummy]

HLbug....how long before we should see improvement (if any) on pepti 1?....

Was convinced the stuffy/runny nose had got better 1 day in but it was back again this morn with a vengeance ...also feeds are still really tense and a struggle....she just can't drink well after first oz or so.. pull away from bottle... no poops since Friday night about 11pm either so tad concerned now....

Also any advice on what happens at paediatrician referral?? Does she have tests for this ?! X

[purpleviolet1]

Thanks hlbug... you have been really helpful.

Wriggley that's not so good..

For anyone referring to this thread later, and for my own record.

Yesterday
6.30pm - first feed. 3oz nutramigen and 3oz current formula (cow and gate comfort)

Unsettled as usual until 10pm

10.30pm - 3oz nutramigen and 3oz current formula

Settled for night at 11.30pm

Woke for feed at 4.45am - 3oz nutramigen and 3oz current formula
Settled quickly although little grizzly/ fidgeting whilst sleeping

Woke crying around 8am, yawning. Offered feed at 8.30am - 3oz nutramigen and 3oz current formula.

Settled for nap at 9.15am (took only 7 mins!)

Didn't wake until midday! Little grumpy. Feed offered at 12.20pm 3oz nutramigen and 3oz current formula

By 1.05pm after some grizzling, settled back to sleep.

I can't believe he is sleeping so much?? Perhaps some weird transition thing...

[HLBug]

Wrigley from my experience I'd say signs of improvements after first few days? It may take longer though. If you've not seen any / much improvement after a week or two I'd personally be going back to the GP to either try a different milk, or partner the milk with ranitidine or something. Like I said above, the Pepti does have lactose in it, unlike nutramigen or neocate etc. Has your GP confirmed a CMPA diagnosis?

For DS we were treated via the pead dieticians who didn't do any specific testing, but helped us reintroduce milk via the milk ladder when he turned 1. He had issues with fish and bananas too, so they did do skin prick tests for those though. Have you been referred?

Purple are you on full feeds of nutramigen yet? Fingers crossed you'll see some improvements once you are. Personally I'd try and get going with those asap as if it is a CMPA then you want to stop the Comfort formula to see if it makes any difference or not. Then hopefully you'll know more by the time you're back at GP on Friday.

My DD has also been VERY sleepy recently, and especially yesterday. On Thursday night she slept 11pm to 8am!!! I had to keep waking up to poke her to check she was ok!! I put it down to the very hot weather and the fact she'd knackered herself silly be crying so much the days previous.