Silent reflux and CMPI - not coping...

[DeeDee1122]

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

[captaincake]

I'm so sorry for what you are going through. We've been on a similar journey and from what we've had all they can try now really is omeprazole and maybe changing aa to necocate. Is there anyone who can have her for a while so you can have a nap? Please remember that you are doing everything you can for your baby and none of this is your fault. Tummy massage and cycling the legs and putting knees to chest can help with the wind. Upright upright upright. Things that helped us were we got the baby bjorn babysitter balance and also a vibrating chair. As did a sling - we had the caboo. A reflux wedge under the mattress, you can get a positioner to stop her wriggling off the wedge, pillow under change mat and never using the flat carrycot on the pram. I really hope things get better for you it is absolute hell.

[TryingtobePrepared]

Dd1 had silent reflux its horrible, if you can't get a wedge we used towels under the mattress to help her stay a little more upright. Worked just fine. Also used dummy as it seemed to lessen her discomfort. I think the sucking keeps the acid down. Also I know car seats aren't great for them but you could let her sleep in there. Gp suggested for 2dd whose symptoms were no where near as bad but said she'd done it with her son and the odd nap in a car seat so you can get some sleep isn't going to hurt. In fact she said having overtired stressed mummy is probably worse! Things do get better it sadly it just takes time to sort out, hold in there and be kind to yourself in the meantime

[DeeDee1122]

Thank you so much for the replies. I've already propped up the crib so she never sleeps flat - she's fed upright and always kept upright for at least half an hr after each feed. Still burping and posseting after each feed though, sometimes she just pulls a disgusted face but a lot of the time she cries.... Hard to tell if the nutramigen AA will help as it's still early days - does anyone know how long it takes for the old milk (nutramigen lipel) to leave her system?

[BabyOnBoob]

Just wanted to give my sympathy and understanding to you. We too have been through this, it's absolute hell.
My dd has been in the sling much of the time, takes omeprazole and has a reflux wedge. She's cows milk protein intolerant so I don't eat dairy or soya now (bf).
It does get better, honestly. I was forever reading this online and didn't believe it. My dd has just recently started sitting up and the reflux is a lot better.
It's nothing you've done, just comfort and love your baby, you're doing a brilliant job. In days past they'd just be put out in the garden and left to cry.

[DeeDee1122]

Can I ask if the omeprazole helped? I'm not convinced the ranitidine is helping My baby. I was unsure whether to ask for a change - I had read that the omeprazole can cause tummy probs.

[StarlingMurmuration]

We've been through this too. It's not advised, but we started letting our DS sleep on his chest, and there was a definite improvement. We use a motion detector monitor to make sure he's breathing.

He has been on nutramigen lipil for about three months and while it has sortedot is reflux (in combination with ranitidine), he hates it and doesn't eat enough. He's been gradually slipping down the percentile chart, and I've been stressing about it to every health care professional we've seen, but it was only after his most recent paediatrician appointment when he'd actually LOST weight, that they took it seriously. They're not sure whether he's still having trouble digesting the milk or whether he just hates it, so we've been advised to add flavouring to the formula and if that doesn't help, we're going to try neonate. It's so stressful - I really feel for you, OP. I'm positive at it has been a contributing factor to my PND. Make sure you look after yourself - do you have much support?

[DeeDee1122]

I'm so scared that I also have PND... The stress and upset and exhaustion have def drive me to this point... I was prescribed AD in the past for anxiety but got past it and have been fine up until now. It just feels like another fail.... Couldn't keep baby in until full term, milk never came in so couldn't BF, can't cure baby, cant stay on top of own mental health - such a fail on so many counts.... I don't know how you are all managing I really don't know how much longer I can do this...

[StarlingMurmuration]

Oh, DeeDee. Unmumsnetty hugs

You need to speak to your GP or HV about how you're feeling. How much use is your other half?

[DeeDee1122]

He is trying, and tries to force feed me but he's at work from seven in the morning until six st night - Then other things need done like shopping etc and I cant drive yet after the c section so in just stuck at home with my baby all day every day at the moment. - I just can't seem to be able to see any light at the end of this tunnel.

[bakingtins]

Sorry you are on such a roller coaster deedee it sounds exhausting. We had silent reflux plus milk and soya protein intolerance with ds2 and it was horrendous. From your description I think you are chopping and changing things far too much, if there is an intolerance the gut needs to heal and that happens over weeks. An AA formula is a big part of the answer for many CMPI babies so stick with that, you need to give it 6-8 weeks to work fully. I'd ask if there is scope to increase the ranitidine dose (maximum is 3 mg/kg equivalent to 0.2mls/kg three times a day) Omeprazole worked better for us in the end but as it's unlicensed in babies they normally want to max out the ranitidine first.
I always recommend the 'reflux bible' a book called Colic Solved by Dr Bryan Vartebedian, and the Little Refluxers support site. Dr V says treating reflux is like steering an ocean liner, you make an adjustment then you need to hold steady and wait for the ship to swing around. I appreciate that's not easy when your LO is in pain.
Take any help offered, get someone to take baby and either sleep or go out on your own, whatever recharges your batteries. It is very hard and draining, but there will be a milk and meds combination that makes things better. Hang in there.

[DeeDee1122]

I totally agree - things have been cha fed too many times - in part that's my fault, I knew the milk was wrong but I couldn't get the docs to listen until she was admitted to hospital, night one with carabel being added to C&G infant 1 resulted in five solid hrs of screaming at which point the doc was called and she was dosed with painkillers. That was with ranitidine in her system. - The following morning they tried her on Nutramigen Lipel despite my concerns about a CMPI and two weeks later all the symptoms were fully back and worse than ever. - I agree that sticking with the AA and carobel and seeing about upping the ranitidine dose and if not then the omeprazole. - Is there much of a difference in the Nutramigen AA and the Neocate milk? I read neocate can be better for refluxers.
I'll def have a look at that book - thank you for recommending and for your reply.

[Ihavealwaysbeenastorm]

OP I've been through this, it resulted in pretty severe pnd for me, I'm still on anti ds

Anyway, omeprozole saved my life, or ds life. He cried 24/7, miserable wee thing, I honestly wished he had never been born at some points, for his sake and mine.
Once he started omeprozole he got alot better, and weaning was a big help, I weaned at 17 weeks on advice from paediatrics.

I promise you this won't last forever but I'd definitely be asking for omeprozole if this ever happened again, which it won't as it has put me off having more.

Ds is 10 months now and a happy wee chap, I love him to bits and he lights up our lives. It will get better OP

[StarlingMurmuration]

Is there a charity like HomeStart in your area? I have a HomeStart volunteer, and she is a) incredible lovely and b) incredibly helpful. She comes once a week for roughly one afternoon or one morning, and looks after the baby so I can get stuff done, or we do the weekly food shop, or sometimes we just go out for coffee.

Do you have an NCT group? Any other friends on mat leave? I had bad SPD while or any, and broke my coccyx giving birth, so I was housebound for about the first six weeks, and lots of friends came to visit. It was really good to have someone there to break up the day.

Can you get your shopping delivered? Then that's one less thing to worry about. Buy in help for cleaning etc? I appreciate this might not be affordable, but I thought that in the sleep deprived fugue state a refluxy baby induces, you might be able to afford it but just not have thought of it. Sorry if I'm suggesting things that wont work, i know that can be frustrating.

[StarlingMurmuration]

Neonate is completely milk free, as I understand it, whereas nutramigen is extensively hydrologists to break the milk proteins down into a more digestible form. So neonate can be the best thing for a baby with CMPI.

With our DS, the nutramigen did solve the reflux, but he just won't drink enough of it.

[BabyOnBoob]

Deedee

You poor thing I remember feeling at breaking point with it all. Try not to beat yourself up, being a parent is really hard work and your baby coming early and your milk not coming in aren't your fault.

I am on ad's after having my dd and all the stress and worry of reflux and food intolerances. I think it's called reactivate depression where you are very low because of the situation.

I know another poster asked, do you have much support around you? I don't but the children's centre and hv have been good. Even if someone calls in to visit you for an hour it helps reduce the isolation and feeling that you're dealing with the horrendous situation alone.

All the parents who've been through this understand what its like

[DeeDee1122]

God how frustrating!! I had this conversation with the GP in regards the AA and the neoCate and was assured that neither had any cows milk proteins and neither came out better for reflux - this doesn't sound accurate... God I cant change the milk again...

• I'm not too sure about volunteers in my area. I'm in Northern Ireland. I can mibbe have a look though and do some research. They won't judge me for being so crap will they??

[DeeDee1122]

In terms of support my family try but they live miles away and all work full time - I dont want to really admit how much in struggling - they all have their own lives and worries and dont need extra worry about me added to the mix.

[bakingtins]

If it's Nutramigen AA you have, it's virtually the same as Neocate. Some individuals will take better to one than the other but they are both based on synthetic amino acids. Nutramigen 1 is hydrolysed milk proteins and some CMPI babies will still react.

[DeeDee1122]

Thanks for clarifying that for me 'bakingtins' my GP would have been in line for a strongly worded chat otherwise....poor woman....ive her tortured already..

[BabyOnBoob]

Sorry Deedee I forgot to say the omeprazole did definitely help.
Let me know if you get some for your dd and I'll tell you how we give it ( it's a dissolvable tablet).

Starling I know you said about flavouring the ghastly nutramigen milk for your ds. Have you tried using banana nesquick? This is what I'll be doing when dd goes to the childminder and she's got to have neocate.

[DeeDee1122]

Did the omeprazole cause any tummy issues with ure wee one? And what sort of dose should I expect ? The little lady is approx six and half pounds.

[bakingtins]

Dose for Omeprazole is 0.7-2.2mg/kg once daily with a maximum dose of 20mg irrespective of weight. The liquid is very expensive, tastes bitter and only lasts 28 days. Most people use Losec Mups which dissolve to give little beads you squirt in. The 10mg tablets can be split in half easily to give you 5mg increments.
A 3.5kg baby could have a 5mg dose, once you reached about 5kg you could go up to 10mg if necessary. Don't let them tell you to dissolve a tablet in 10 ml water and give 3ml, for example, it doesn't form a suspension and this is not accurate. If they want to give anything other than 5mg increments they will have to fork out for the suspension!
We used 10mg between 4 and 16m of age with no problems. It potentially can cause issues with inability to digest food properly as there will be virtually no stomach acid, didn't cause a problem in practice. Weaning off it is a bitch!

[BabyOnBoob]

No it didn't cause any tummy problems. I'm not sure of the dose your dd would need but my dd's on 15mg once a day and she weighs about 16 pounds.
You're not crap, honestly and people won't judge you. I do understand though I really struggle with reaching out and asking for help and feel ashamed at having pnd but many people are very understanding. I'd have been lost without my family support worker, who when I told her about some negative feelings I was having, said they were normal.

[BabyOnBoob]

Baking yes I'm dreading the weaning off the omeprazole

[Ihavealwaysbeenastorm]

DeeDee I'm in NI too, pm me if you like, it's so hard and I totally understand.
Omeprozole gave ds runny poo but that was it, he was only on it for a few months then back to ranitidine which he still occasionally has.