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Infant feeding

Silent reflux & CMPI - not coping...

6 replies

DeeDee1122 · 17/04/2015 13:00

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 help my baby...

OP posts:
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poppyinstitches · 17/04/2015 21:39

My heart goes out to you, have no real help to offer. Has the heath visitor been any help? Is there someone who can sit with you baby while you can get some rest?

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BeccaMumsnet · 21/04/2015 12:55

Hi there DeeDee1122 - we're just going to pop this over to a more appropriate topic so you can get the best response.

We hope you get this sorted soon.
Best wishes from MNHQ Flowers

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stargirl1701 · 21/04/2015 18:58

Hi. I was you. DD1 screamed her way through life until we got her medication correct.

The sleep deprivation coupled with the feeling that you are failing led to post natal anxiety for me. I came home from every group sobbing because my baby was the only baby who just screamed. All the time. 10 minutes was average sleeping time. 40 minutes was good.

Coping strategies:
Get a cleaner
Ask friends/family to help with meals
DH to drop laundry at laundrette on way to work & pick up on way home

I found motion helped but became way too tired to drive so DD1 and I rode the bus in circles for hours. I took a pillow and DD1 was in the pram. I chose routes that were longer than one hour. I went walking with the pram to get out of the house. I used a sling in the house so I could eat and go to the loo without the screaming. Being upright may help. After 3 months of trying to force her to sleep in propped up baskets/cribs/cots, we co-slept. In hindsight, I should've swapped the carrycot section of the pram to the seat and inclined it. Lying flat was a baaaadddd idea.

After the months past, we began to each take one night a week in the spare room drugged up on Night Nurse to sleep through the noise. One night away in another house once a month. One evening a week where a GP took over for 2 hours and we drove to a layby and cried/hugged/slept in the car.

Home Start may offer you a volunteer for free to help out. This is free and unrelated to family income. Your HV can sort this out or you can self refer.

Silent reflux is hell for baby and parents. ThanksThanksThanks

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Waffles80 · 21/04/2015 19:34

Hey - this sounds like utter hell and you're clearly doing so, so well in fighting for the right treatment for your baby.

My babies had silent reflux, though no way near as severe as yours. How long have you been on ranitidine? We found it made a difference within a week. If it's not working can they give you omeprazole?

I absolutely second asking HV for support / referal to Home Start.

A sling might help with keeping upright (we had a Hana baby wrap whih was great). If the screaming is getting to you, headphones and music while you rock and cuddle her. Earplugs too might help when OH is doing his shift with your baby while you get some rest.

I really do feel for you - it's just awful. But it will, definitely, absolutely get better. Keep posting here for support.

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Waffles80 · 29/04/2015 13:18

How are things OP? Any improvement for you?

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dairyfreequeen · 29/04/2015 19:53

you poor thingSad are you under a pediatrician? nutramigen doesnt work for every cmpa baby, i think the more 'safe' one after that is neocate so if you feel like shes still reacting (and from your description, sounds like some of my ds' symptoms) they should be able to prescribe you that. Youve properly been through the mill though!! There are some very good cmpa support pages on facebook through Allergy UK

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