Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
Allergies and intolerances

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Silent reflux and CMPI - not coping...

57 replies

DeeDee1122 · 17/04/2015 13:05

My baby was born almost six weeks ago at 34 weeks and since then we have been on the most exhausting, heartbreaking rollercoaster... after many gp visits and a hospital admission we have been told she has silent reflux and a suspected CMPI - after many milk changes - Nutraprem, C&G infant 1, C&G comfort milk, back to C&G infant 1, Nutramigen Lipel - we started on Nutramigen AA three days ago. We are also on Ranitidine 0.55 of a dose three times a day and carobel to thicken the milk and have been now for a few weeks. Since the milk change things have not been good... Explosive loose nappies almost after every feed, screams like she's in pain, lots of bottom wind, reflux is not under control - she's comfort feeding, snuffly all the time, burping which makes her cry and hiccups... I've had basically no sleep now since she was born, I'm exhausted, feel like I'm slipping into depression and can't see any way out of this as I cant seem to be able to help my baby

OP posts:
Primaryteach87 · 17/04/2015 20:41

DeeDee, can I just say how totally totally normal how you are feeling is. These circumstances are incredibly hard. Having a poorly baby is very very emotionally difficult. Sometimes mums can be made to feel weak or unstable when in fact it is that we are overcoming massive obstacles and daily battling for our babies against all the odds. Be proud! You are doing a fantastic job. DO NOT compare yourself to people who have had easy births & well babies.

StarlingMurmuration · 17/04/2015 20:42

BabyonBoob, thanks, that's what we're going to try, on the dietician's advice. That or something called Crusha.

Original poster
DeeDee1122 · 17/04/2015 20:47

Bakingtins and babyonboob - excellent info about the dose, many thanks. I will def rem this if the ranitidine doesn't begin helping.

  • The asking for help part and the admiring there's a problem is not easy for me. Esp when everyone keeps telling me how lucky I am. I dont feel lucky infact there's many time during the day I regret ever becoming pregnant which leads to horrendous guilt... Friends who had babies in the last yr all say how much they love it whereas I feel like I'm losing my sanity.
OP posts:
juniorcakeoff · 17/04/2015 20:59

Dee just quickly I have recommended carobel on other threads but it does cause some babies wind pain and loose stools, it could be the carobel rather than the nutrimagen AA that is causing the current problems, is there another milk thickener you could try or leave the thickener out for a bit?

Even 6 week olds without being premature and having CMPI are a bit shit, miserable, comfort feeding etc. etc. 6 weeks is the peak of crying and misery IME, it feels like a lifetime for you but this baby will get better and your life will get better. Also she might as well be miserable for someone else rather than you so if you can find someone you trust to take her for an hour, go for it.

Original poster
DeeDee1122 · 17/04/2015 21:07

We initially stopped the carobel on the prev milk (nutramigen lipel) because of suspected issues with wind and constipation. When we started the Nutramigen AA we started without the carobel but her reflux got bad again and has remained bad - the HV suggested trying the carobel again so we have the last few days - it's only been a few days but no improvement to the reflux and starting to see the same wind issues again now the carobel is back... - dont know what to do now

OP posts:
Original poster
DeeDee1122 · 17/04/2015 21:09

Thought because the AA is a thin milk we needed the carobel with her having reflux?

OP posts:
Original poster
DeeDee1122 · 17/04/2015 21:10

It's silent reflux though - should the ranitidine be dealing with it and we dont need the carousel? - if the ranitidine was working that is....

OP posts:
Ihavealwaysbeenastorm · 17/04/2015 21:19

Carobel is a thickener, to help keep the milk from coming back up the gullet. Ranitidine, omeprozole etc are antacids, which neutralise the acid and as such when they do reflux it doesn't burn as much. Personally we only continued with carobel because ds wouldn't drink his bottle without it, he'd gotten used to it and the texture. He still has it despite the fact that his reflux is all but gone.
For ds it was the antacid that caused the runny poo but it made him alot happier so I kept going with it until he was weaned and then we went back to ranitidine which was fine.

It's such a minefield, you're dealing with a milk intolerance too which I didn't, I breastfed for 4months and every feed caused hours of screaming. Honestly it was the worst time of my life Sad

Original poster
DeeDee1122 · 17/04/2015 21:31

God it really is such a mine field.....

I'm not sure about continuing the carobel now - I'd hoped that by reintroducing it with the Nutramigen AA as it seems a thinner milk it would help with the reflux but instead we still have the reflux but have wind and gut pain as well. Suppose it could be done to the change of milk at the start of the week??
I'm sorry - I'm blethering now....I just dont know what to do anymore...

OP posts:
BabyOnBoob · 17/04/2015 21:37

Deedee I felt enormous regret as well about having a baby, even though she was planned. I wished I could turn the clock back and like you had the terrible guilt for feeling regretting having her.
But things do get better. I won't lie it's taken a bit of time as my dd is 9 months old now. My baby is amazing though and I adore her so much.
Don't worry about your friends - I know I would go to baby group and then go home and cry so even though they come across one way, behind closed doors they may be struggling.
You're doing great, keep going and keep posting. I found that people saying they understood what it was like really helped Flowers

Ihavealwaysbeenastorm · 17/04/2015 21:40

DeeDee I was the same, I didn't get the support I needed at all, in the end I just tried everything and muddled through. I often wonder if it was the medication is was on for hyperemesis, or the fact I couldn't eat for the first 28 weeks of pregnancy and when I did it generally got boked up again.
So unfair, I feel like his babyhood was robbed from me, what was supposed to be a joyful time was miserable, and the impact that's had on my mental health too.
I'm just so grateful my DD who is 3, is an absolute joy and has handled having a baby brother who did nothing but cry, do well, she loves him to bits. you will get through it, someday you will look back and it will feel like a million years ago, just so hard when you're living through it and you feel like such a failure. It's got to a point where I can't be excited for for pregnant friends and family.
I just feel that dread for them, incase they go through this.

Original poster
DeeDee1122 · 17/04/2015 23:18

She has been crying again now for hours... I dont know how any of us will continue to get through this....

OP posts:
Patatas · 17/04/2015 23:32

Oh you poor thing, it is such a stressful time. Do go back to your GP to talk about how you are feeling and if the meds might need changing. My ds has silent reflux and cmpi. Losec, Gaviscon and soya milk kept his under control. I asked for a hospital referral and they were able to finally get the doses etc sorted.

Ask for as much support as possible, friends, family, even just a couple of hours at the weekend will help you recharge a bit. My mum was able to have ds overnight once every 6 weeks, that break was a lifeline. Speak to your hv, sometimes useless but sometimes not, its worth a try.

It will get better, you will be able to enjoy her. There is a great very supportive fb group called living with reflux uk that was a great support to me. Also google the Australian reflux charity, they have lots of really good information and advice.

Sending you a big hug Flowers

Original poster
DeeDee1122 · 18/04/2015 06:37

So hoping this will soon improve... I'd so love to enjoy her....

OP posts:
missy111 · 18/04/2015 06:49

Dee, you will get through it. It is rough, but you will. My LO was a 33 weeker, with CMPI and SR. We found infacol helped with the wind. If you're on Facebook there are some fab groups on there where you can get lots of support xx

BabyOnBoob · 18/04/2015 07:29

DeeDee sorry I'm a bit tired but just do what you can to get through this tough time. When I was pregnant I said I wouldn't sleep with dd in bed with us, as that's our bed. Well she's in our bed with me and dp is in the spare bed as that's the only way any of us get any rest. As long as you do it safely it's fine.
What I used to do is get dd to sleep in my arms in bed and then put her in bed. Sometimes it didn't work as she woke up and I was literally up in bed all night when she went to bed. This was really depressing as I thought it would be like this forever. Sometimes they just want to be with their mum. Don't worry about what you should and shouldn't be doing like I did, just do what you need to do to get through this. You WILL enjoy her I promise. I didn't believe it but they change so quickly Flowers

Ihavealwaysbeenastorm · 18/04/2015 20:53

OP hope you're okay, how has today been?

Original poster
DeeDee1122 · 19/04/2015 00:06

Today started off not too bad but as always has deteriorated as the day wore on - at this time the continuous crying has been the sound track now for hrs. There doesn't appear to be any consoling her....

OP posts:
Original poster
DeeDee1122 · 19/04/2015 10:23

Hi all, can I ask - my wee one has been so bunged up sounding - almost sounds like she has a blocked nose and sounds kind of hoarse. Is this typical of reflux?

OP posts:
IntolerantGourmand · 19/04/2015 16:01

I'm so sorry you're all going through this too!! My little boy suffered so badly with CMPA and also severe to all nut, tomato, strawberry, egg, wheat and more! We had a long hard fight til he was 16 months to finally get allergy testing done! It was awful! He was in and out of hospital, and broke my heart to see him suffering as he has! If you guys need recipes, or looking for tips and tricks, I write a blog detailing my little boys journey to getting better! It may help! And I'm determined to change the way allergies are perceived, enough suffering from little ones, it's got to stop! x
www.intolerantgourmand.wordpress.com

Original poster
DeeDee1122 · 19/04/2015 16:30

Have had to call the out of hrs GP - she hasn't stopped screaming now since yesterday evening - she's exhausted, she's hiccuping which is making her scream and she's holding her breath... I'm actually at breaking point now... I really can't keep doing this....

OP posts:
IntolerantGourmand · 19/04/2015 16:55

Oh no, I'm so sorry! :(
Have you had any joy with out of hours?
Sending big hugs and strength! x

Original poster
DeeDee1122 · 19/04/2015 19:16

Ladies need some help - the out of hrs gp has prescribed omeprazole - 2.5 of a dose per day equating to a quarter of one 10mg disperable tablet. My baby weighs 6.10 lbs so this is about right? Any tips on how to give? 'babyonboob' you mentioned you could help ?
go also said about starting infant gaviscon as well but I'm concerned this could cause constipation..?
Any help or advice much needed.

OP posts:
bakingtins · 19/04/2015 19:27

6lb 10 oz is 3kg, so dose range would be between 2.1mg and 6.6mg per day. If your tablets truly disperse to form a solution then you can dissolve a half tablet in 5ml of water and give half that volume. If there are MUPS the tablet dissolves to leave little balls that contain the medicine and they don't disperse evenly. It's difficult to cut them into quarters accurately. With the MUPS the best way we found to give them was using a neuro fen syringe as they don't go through a normal syringe barrel. Put the correct amount of a tablet directly into the syringe barrel, draw up a bit of water to dissolve it, squirt in to the side of baby's mouth. You'll be left with some of the little balls, draw up a bit more to resuspend and squirt in.

Do a trial dissolve of a tablet and report back.

bakingtins · 19/04/2015 19:28

Don't suddenly stop the ranitidine, it takes a few days for Omeprazole to work fully. Wean it down over a week or so.

Swipe left for the next trending thread