silent reflux will it ever get better

[kimberleydodd]

I'm not sure that im posting this in right place but hoping someone can help! My almost 5 month old little boy has suffered with silent reflux pretty much since day 1- no sick just acid :( he is on Zantac for it but it is by no means 'cured' he is uncomfortable during feeds pulling on and off the breast and arching his back in pain. Every day or so we have a bad attack usually just b4 a feed where he just screams in pain and hunger but wont eat or settle. I end up having to sshh and pat him to sleep in my arms to calm him & feed him in his sleep. He is v uncomfortable after feeds despite holding him up for half hour or more. Despite my best efforts he cant settle himself to sleep at all and never has. I have to pat/walk him to sleep every time day and night. In the day he naps for 30min unless i walk around with him then he will sleep maybe an hour and a half which i try to do once a day else he gets too overtired. At night he will wake 30mins after going down after an hour of settling will sleep maybe 2 hours then feeds then maybe 2/3 hours then feeds then an hour and he wakes up uncomfortable, the only way to keep him settled is to walk around the room patting his bum at 4/5am! I had been feeding him little and often burnt last weighing he had lost weight so have been told i need to feed 2hourly and also been given hypoallergenic formula from gp to top up as he has a suspected cows milk intolerance, we r waiting on a dietician appointment for this. (until this week was exclusively breastfeeding on a dairyfree diet also nothing acidic/spicy/tomatoey/chocolatey!!!! He loves the formula drinks it all but has been up every hour all night with gas pains since starting it- gp says to give it a few weeks and isn't concerned! I hope he settles on it as keen to stop breastfeeding now but obviously can't until he is ok with formula.
i have a 2 year old aswell and my partner is fantastic with her but doesn't have much patience with the baby so its like we have a child each :-( me and other half are constantly arguing he blames me for baby not being able to settle him self he thinks ive been too soft which is true i suppose but i cant listen to him cry in pain as crying makes the reflux worse. Its my job as a mother to make my baby comfortable and i feel like such a failour cause i cant. All i want is for him to be content and happy and sleep... Also apparently in selfish and lazy for wanting to sleep, i know sleepless nights are normal but absolutely no sleep is not! Ive not had more than 3 hours straight in 5 months and its killing me. I'm so sorry for the rant but need to get this off ny chest. I'm so desperate to help my little boy learn to self settle as im sure this is the problem but don't see how he can when he is uncomfortable, any advice appreciated xx

[kimberleydodd]

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[EssexMummy123]

Check out the little refluxers forum
maybe ask GP for a different prescription? we had ranitidine
avoid soya

[BookTart]

DD had Ranitidine (which I think is Zantac) in conjuction with Domperidone and it worked okay for a couple of months, but the effectiveness of Ranitidine gradually decreases over time. When her silent reflux flared again at 6 months we were given Omeprazole/Losec mups for her, and 6 months later it is still under control. This is in conjunction with a dairy free diet. We began weaning onto solids at 5.5 months following medical advice, but it made very little difference to her. I'd say that from 6 months she just got better and better, until now at a year she's lovely :) She woke every hour throughout the night for a feed until we worked with a sleep consultant from 8 months to help us resolve her many issues around feeding and sleep. She started to sleep through at 11 months. That might sound like a long time, but once her medication had been adjusted successfully it flew by. You have my deepest sympathy, it is relentless and isolating. Do you have support from family and friends?

[kimberleydodd]

Thankyou both for ur replies, yes zantac is ranitadine. He is on the larges dose for his weight already. I know their are other things he could have to help with reflux but my other half is v anti medicine- in an ideal world of coarse i wouldn't be giving him any but he needs it! My partner genuinely thinks he is better and that the reason he is how he is is because he is spoilt! I just do what i need to do to try and make him comfortable after all he has no idea why he feels like he does!
he was waking all night to be fed aswell until a month ago when i thought enough is enough as he was obviously uncomfortable because he was just eating and eating so i cut it down to strictly 2 feeds in the night and managed to get him to take a dummy at the other times when he woke then just rocked him back to sleep till the next time! I thought i was doing the right thing until last week when he was weighed and like i said he had lost weight, my other half and the health visitor think i was starving him! The ironic thing is that in those couple of weeks when eating less he was a hell of alot more comfortable!
the thought of things getting better at 6months is promising, if i knew he wasn't in pain i would have no problem being a bit stricter as falling asleep independently and self settling are such important skills i feel like i ak holding him back as i cant seem to get him to do it but in sure its because of the discomfort rather than the fact he is spoilt.
my family are not local they are all up north where as we r in south west and i don't really have any one to speak to about this other than my partner, this hasn't left time for any kind of social life, between looking after the baby & trying to find time for my 2year old i barely have time to take a shower! I don't mean to sound ungrateful as i know i have so much to be thankful for but its hard to enjoy this time when in so exhausted physically and mentally!

[kimberleydodd]

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[BookTart]

Regardless of what your DP thinks about medicine, I'd get his dosage/medication reassessed. If he needs Omeprazole it is usually only given once a day instead of the three or four doses of Zantac, so it is much easier for everyone.

Self-settling is going to be difficult for him until he reflux is properly controlled, so it might be best to concentrate on that for now and take one step at a time. If he does better on fewer night feeds then surely that is the way to go? Was his weight loss big? Was he ill at the same time? DD lost weight just before Christmas but it coincided with a horrible virus and the hv was okay with that, even though she dropped a centile on the charts. Once he is on solids (soon!) then it will be easier to get calories into him during the day instead of during the night.

Do you go to any local baby groups? You might find some good support there. I'm sorry you are facing this with so little support, it is so hard.

[kimberleydodd]

He lost 1 1b but when i weighed him its been 6 weeks since the last time what with Xmas and new year, he dropped from 91st to 25th centile :-/
health visitor advised i start weaning now but in reluctant to start till we've had dietician appointment incase i lt ms things worse? Next yo food sleep is the most important thing a baby needs and my little boy averages about 11 hours of v broken sleep in 24hrs most of that bcause in holding him. Is that in itself wrong? Should i be doing less and hoping he will do more or should i continue to do what needs to be done for him to get the rest he so need's? I don't even care about my own sleep really i just cant bare the thought of my lovely baby exhausted & uncomfortable all the time I just wish i could fast forward 6 months( what a horrible thing to wish away this time but at least then my baby won't suffer so much) before this 1 was born I was working and my oh stayed at home so never got going to any baby groups really, we go to the drop in when they're weighed but that's it xx

[bakingtins]

Another vote for asking for Omeprazole, worked much better than ranitidine for my ds2. He was dairy and soya intolerant, and I bf him until he was 2. Which formula do you have? If your LO reacts to traces of cows milk via breast milk he needs an amino acid formula ( Neocate or Nutramigen AA) not a hydrolysed one. The protein fragments in the hydrolysed formula are the same size as what passes in breast milk and are likely to cause a reaction.
Re naps, we settled on one long daytime nap with me marching with the pram and focussed on getting nighttime sleep as close to 12 hours as we could ( didn't sleep through until 18m but tried to be clear all of that time was bedtime)
A dietician's support when weaning is valuable, you may need to introduce foods v slowly using the '4 day rule' and IME early weaning of the refluxers with allergies/intolerances made them worse. The little refluxers site already mentioned is v helpful, and the book Colic Solved by Dr Bryan Vartebedian.

[Artistic]

My DD is 3.5 months & has a bit of reflux but not anything painful, so am sorry am not useful there. With regards to sleeping, have you tried using white noise? There are apps you can download on your phone & babies love it - they sleep off in seconds. I know it's not 'self settling' but without the reflux fully under control it's going to be difficult for him to self settle, so perhaps you can you this as an interim relief for both of you.

My DD loved to sleep while we walked her, but we had to stop that too tiring and instead we rock her on our lap with a bit of humming, patting. This is the closest it gets to walking..without wearing you out.

Most of the night waking is owing to tummy not being full. The only way around this is to improve his daytime feeds - by addressing the root cause which is the reflux.

With regards to your partner being unsympathetic to your need for sleep, you can try what I did - couple of nights in a row - wake him up every time you wake up...get him to participate in settling the baby...I promise you by the 3rd night he will be more than happy to not be disturbed & to also leave you alone to sleep as you can. It's easy to preach about sleep until you feel the pinch of sleepless nights!! He needs to feel it.

Good luck.

[kimberleydodd]

So could he have the omeprazole instead of the ranitidine? That would be a compromise with oh as he really doesn't like the idea if him having drugs he says me giving them to him is doing more harm than good, i on the other hand would try anything- we even took him to see a cranial osteopath which was a waste of time imo!
we have tried white noise doesn't make any difference for him :( he still sleeps swaddled else would never go to sleep. Had a swing which he hated, he screams in the pushchair and the car, in sure the motion makes him feel sick? Oh his formula is aptamil pepti xx

[bakingtins]

Yes, but don't stop the ranitidine abruptly, wean down, it would take several days for the Omeprazole to kick in. They are basically doing the same job (antacid) but act on different receptors. The Omeprazole doesn't have the problem of becoming less effective over time and it's only once a day.

Aptamil Pepti is a hydrolysed formula, go back and ask for an amino acid one.

Car seats tend to make them hunch over which makes the reflux worse. Experiment with the pushchair, might be worth trying to borrow a few and see if a different position helps. Try reclining it so he doesn't hunch down, but is still head elevated, about 45 degrees might be good.

[kimberleydodd]

GP was reluctant to prescribe a different formula he said that unless he is suffering with diarrhea or has a rash then not to blame the milk... Can GP prescribe Omeprazole or do i need to see a pediatrician? Today i sat him in my daughters forward facing upright carseat and he was alot happier so i might need to try a new seat for him. I''ll definatly experiment with pushchairs but im pretty sure its the motion that bothers him as he will sometimes sit happily in the pushchair until you move it then he screams in pain :( he spent the first 3months in a sling literally lol but now he screams at the sight of it and i have 3 to choose from! People think he is spoilt as i have to carry him around but how can i knowingly do something that i know is going to hurt him?!

[Superworm]

I second changing formulas to neocate or similar. Does he have the Aptamil pepti because of suspected cows milk allergy?

[kimberleydodd]

Yeah that's right, when he was a month old i tried normal aptimal, hipp organic and aptamil comfort and he was in pain with gas and tummy ache for hours so i just had to persevere with breastfeeding him as gp said he could not prescribe hypoallergenic formula unless the allergy was proven. After he lost weight tho and i told gp he agreed to trial the pepti to top him up with until we have seen the dietician (finally got appointment through today for 3 weeks time) little one loves this milk, he seems alot more satisfied after a formula feed although perhaps a little more refluxy & trapped wind mainly at night so just cant win! X

[bakingtins]

PM me your email kimberley I have a paper that explains the link between reaction to breastfeeding and peptide length in the formulas, I will send it so you can show your GP.

[kimberleydodd]

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[bakingtins]

Kim I have emailed you. Ask MNHQ to delete the post with your email address. You can private message a poster using the links top right of each post.

[stargirl1701]

Yes, it will. We found 5 months to be the worst point. DD1 improved from 7 months and we were able to wean her off the meds after 12 months. Hang in there. Do you have friends/family nearby to get a break. DH and I took one night per month away for a break. It's all about survival with reflux.

[caravanista13]

I don't have any experience of reflux but I do know that you can't be too soft with a baby. You're doing the very best you can in a very stressful situation - I hope your DH begins to appreciate it.

[kimberleydodd]

Thankyou bakingtins will take a look now :)
unfortunately we don't have any family near by i so wish we did, time ls like this i could use my mum being around the corner!
my partner doesn't like me speaking about his reflux to people i know it sounds stupid but that's the way he is, he is v proud and again stupid as it sounds he thinks it is a sign of weakness, because u cant physically see the illness he pretends its not there blaming his crying for boredom saying i don't do enough with him, he thinks in limiting his development cause i hold him up alot of the time and i wont leave him to cry..
i feel in an impossible situation and just cant wait until this is a memory x

[stargirl1701]

That's awful. You need his support! Do you have a sling? Putting DD1 into a sling meant I could eat without the screaming. What a relief!

I took to riding the bus too. I became too tired to drive so popped DD1 into the pram and got on the bus - with a pillow for me! I chose routes of more than 1 hour. We got on in the village and did a 'circle' then got back off in the village. DD1 slept with the movement and so did I. It was a break and I got to know some drivers well!

[kimberleydodd]

I have 3 different slings, he used to absolutely love going in them and always fell asleep but always woke screaming i presumed from acid burning him, now he gets upset at the sight of them! He is content on the bus as we have to catch it 2 pick my daughter up from nursery but never ever goes to sleep! That's the thing i think i could cope with the awful sleepless nights if he atleast gave me a break in the day but it takes me 10mins to get him to sleep, i then have to fold him for 10 mins before i can put him down & he wakes up 20mins later! Ive tried to have a nap in that time but always just as ive dropped off he is awake & that's torturous lol xxx

[jojomama1507]

I had exact same situation as you. Dead just started to settle down after about 4.5 months of madness. She's 6 months now has learnt to sit up and is a very happy little baby 70%of the time. I swapped to formula gradually at about 4 months and as much as I hate to admit it I think this helped alot also been weaning since 4months started on baby porridge service made er constipated doesn't have medication as doctors refused to help us !! Does he settle better after bottle you could try a bottle just for last feed that's how I started it and she gradually dropped night feeds. Hope things get better for you I know how hard it can be you will find something that works for you both and things will improve

[kimberleydodd]

glad things have improved for u jojomama:)
seems to be getting worse for us... he was awake all night last night crying in discomfort.. partly reflux and bad gas pains too :( finally had a big poo at 4am and crashed out till 8am.. hate seeing him exhausted :( my doc advised weaning so have tried him on pears, squash and rusks but everything seems to upset him.. right after eating he suffers pain with his reflux but i thought solids would stop that? last night he had 1/2 rusk mashed with milk which he loved, he is a v hungry boy and imo well ready for solids but everything seems to disagree with him. he is on a special formula for 2 feeds a day which i will be gradually increasing as desperate to stop bf now- but again im sure this is giving him gas, gp said normal but i think im gonna push for a different milk as im sure his discomfort isnt normal!
My other half wonders if the ranitadine nuetralising his stomach acid is making it hard to break down food hence gas pains? i feel like a failure cause my beautiful baby boy is always suffering, it breaks my heart i wish i could take his pain xx