Baby milk nightmare for LO with reflux. Suggestions?

[Nnpower]

My dd was born at 37 weeks and had minor iugr complications. I tried to breastfeed her but she had weight gain issues and i was on medications so I began to bottle feed. She started off with earths best organic dairy powdered formula. She seemed okay, but I noted her reflux, gas, and constipation. The peds nurse recommended goodstart. No change.

Her doctor then prescribed Zantac .5 ml x 2 a day and enfamil gentlease ( a low lactose baby milk). She did poorly with the powder but She did alright with the ready to feed for about a week, but then reverted back to being fussy, in pain, silent reflux and apnea, and extremely windyHer constipation was gone and she started to poo twice a day.

She was then switched to similac sensitive ready to feed.She did better with that but still had pain, terrible reflux, and horrible gas around feeding times only.

Last week she was put on alimentum after completely refusing nutramigen. she got even worse and continued to have problems with painful gas and now she had runnier poop and goes after every feeding. She also screamed during the feeding, which never happened before.

Her doctor then suggested similac isomil soy and she did pretty well but I wasn't comfortable with soy formula so I tried nutramigen again. I tried powder, concentrate and ready made and she was soooooo sick just like on the alimentum. It made no sense to me how she could do best on soy but have a horrible time with both hypoallergenic formulas. She wouldnt sleep for longer than 15 min at a time and only while being held, she was crying all the time and her reflux and silent reflux got so bad. She seemed to fare quite a bit better on normal formula than hypoallergenic.

I know I need to give it at least a week or two but I has seeing her in pain and I am really wondering if her real problem may stem from certain ingredients in all of these formulas. I know most of them contain corn syrup and all of them contain marteks dha and ara. Any suggestions? I'm almost thinking about investing in European baby formula to avoid both ingredients :/ I'd try the organic soy but she does so poorly with the powdered formula, especially after thickening it. Also I'm not too comfortable with the rice syrup issues with baby's only.

She's now back on the isomil and her doctor has taken her off of Zantac and put her on Prevacid solutabs. She's definitely sleeping better and less fussy but she's still got bad silent reflux and she's still congested, sneezy, hoarse, and coughing. Her doctor doesn't think she needs elemental formula since she's gaining weight and not wheezing or breaking out into hives or eczema.

I know that Prevacid takes up to two weeks to get into her system properly and that switching formulas so much is really bad, but I really want her to be okay and not have to suffer adverse effects now or later from soy formula or any other formula. Ive actually considered weaning her onto cow and gate comfort but since I have no proof or diagnosis one way or another about cmpi, I'm afraid :/ Any suggestions please?! She will be 6 weeks on Monday :)

If it's cmpi then c&g comfort won't be any good as that's merely reduced lactose.

Nutramegin I have heard is foul many babies won't take it, there r other options such as aptamilpepti ( dd2 had that it's great stuff) or c&g pepti junior.

Has gp suggested any stay down formulas? I would speak to dr agai. As if she's doing well on soya then maybe that's what's best. Although soy is also a highly allergic substance so watch out for return of symptoms. prescription milks R just like other milks in that one particular type sits better than others and u may have to try a few .

Oh and the congestion sounds lke s dumdum to me. Dd2 was sniffle and had a gunky eye until she got onto aptamil pepti. She also didn't have eczema but skin was dry

Like a symptom ( bloody iPhone) ignore the typos

She almost choked in her sleep on her own spit up last night and now she's refluxing like mad and I'm worried it'll happen again. I gave her a bottle of cow and gate comfort milk earlier this evening so I feel worse than a dum dum, but she was already looking ill for the past few evenings ever since we put her on the new meds and stopped her old ones. I'm too afraid to sleep now.

As for the aptamil pepti, I live in the states and the expat shop is charging me £65 to ship over one 450 g tin :'( the cow and gate pepti junior is £35. All we have here are alimentum and nutramigen and then of course the elementals like elecare and neocate. I'm afraid to see how she will react to the elementals. When I fed her the nutramigen and alimentum, you'd have thought I was giving her battery acid. She actually did better on the low lactose and lactose free. :(

Sorry I meant the cow and gate pepti is 45£

Can u take her to hospital? She's probably dehydrated with all the vomiting and her stomach isn't going to be up to accepting any thing until the drs/ nurses/ experts help you figure out just what is wrong and what the right milk is. If it's reflux then they need to do some scans cos sometimes it can be bad enough to require surgery. There are also methods to help such as keeping your baby upright you can special mattresses with a harness , prop up cot, roll a towel and place under the change mat etc all to help. She sounds really poorly :( think you need more help :(

Have u tried giving her a bottle of cooled boiled water? If that stays down it's more indicative of a problem with the milk if it comes up then more likely it's reflux ( not definitive obviously but a friend had this done with her son to see if it was a milk allergy). Is there any chance she could have caught a stomach bug? X

The nurse told me not to come in to avoid contagions. There's been an outbreak of perussus locally and she hasn't received her shots. She said to wait to see the paed on Monday. Her silent reflux seems worse at night even though I keep her upright after feedings. She seems to do better once she actually does spit up. She also passes a lot more gas at night. We have trouble winding her at the end of feedings. She can be winded with no problem in the middle of them. I've tried preparing the milk that very way. She spit up about a small spoonful a few times hours later and spent a lot of time gagging straight after.

:( I have no experience with reflux so have no idea if what u r saying is normal. I do however have experience of and there is some stuff that does sound very similar but could well be true for both problems. It does sound like what u need is further investigation but that's not possible right now due to the out break :(

 Would it not be possible to buy one tin of the pepti just to try? Sounds like that's all u can do right now until dr can safely refere u. How far have they gone so far in their work up of the reflux have they x-rayed? Done and allergy tests? Seen if she can tolerate water alone?

Experience of cmpi that shoulda read

. Everything had been based on symptoms only :/ I think I will just order the cow and gate pepti but it might take a while to get here :/

Can.you still get Enfamil AF?

This is what DD had and it was fabulous.

There are of course higher calorie thicker milks designed for reflux. Cow and gate also make a milk thickener. I really hope the pepti milk does the trick cos the relief will be Pretty instant and will eliminate the needs for all the reflux meds if it turns out to an allergy rather than reflux. Infantrini is the name of one milk I know of that's thicker and high calorie for severe forms of reflux. Really hope you find solution quickly so u don't have to keep playing around with different combinations of milks and meds x

Thanks. Me too she's had an even worse day today. I went as far as to give her a dose of ranitidine from how bad off she's been. And brokenbanana she's tried that. Didnt help. She's been using the ready made milks because their made thicker and that seems to help but since she's mostly a silent refluxer keeping it down isn't as much of a problem as her pain is.

:( very un MN-y ((( hug)))) I know how hard to see your precious little bundle in so much pain is :( thankfully mine was so easily sorted although had I listened to original drs it woulda been alot worse for alot longer. The best advice I can give is keep fighting for your dd. You may not have a medical degree but your are her mother and you know her better than anyone else. If you aren't happy with what been said or you think there's more to it keep pushing til u get what u need for her !! Xx I truly hope that you find the solution soon so at very least the reflux is as under control as it can be! X

Hey, I just added a reply on your other thread. In the meantime the things that saved us were:
Putting dd to sleep on her front. I know it oat recommended but on her back she has never slept for more than 20 mins without waking screaming. When on her front she started to go 3-4 hours instantaneously!
Nappy changes can be hard as they need to lie on back, you need to just make these as quick as possible and lie baby propped up on a cushion or something.
For baths there is a product called a tummy tub (basically a bucket) where they stand up to have a bath-this was great.
White noise! We blasted this out to help her sleep until she was about 8 months, bought a sleep machine in the end but initially used an iPhone app or a 12 hour vid on YouTube (it's the first one that comes up when you search White noise)

My baby would howl if I tried to put her in the pram (again, lying down) so I started to use a sling ALOT. I bought a babyhawk mei tai what an investment I still use it 5 times a week now and she is 1. It took away alot of stress having her upright against my front.

Reflux babies are often soothed by movement which is why the sling is so good. But for the hours you need to sleep then a mamaroo could work. Have you heard of these? Bet you have if you're in the US, my American friend lent me hers (her dd actually hated it ha!) and it was good for us reclined with a blanket under baby and moving around connected to the iPod with the White noise blasting out.
I'm usually a baby gadget hater but after having a baby with reflux I changed my mind as you need to survive!
It might be worth looking into an amby nest hammock as a bed too but only do this if your baby will sleep on their back.

Please come back to your threads and report back it is so, so tough looking after a reflux baby! I have been there you are not alone!

Copying and pasting my update from another thread. So sorry for the typos. Holding sleeping LO :)

The paed said she has no apparent allergies to formula so isn't going to affect too much what she's on which I've noticed. He said that reflux babies are a bit more sensitive, so low lactose, soy, or lactose free helps, but unless she has allergies hypoallergenic is to be avoided because it creates a smaller curd that's more easily spit up. I. Sticking with the cow and gate comfort for now since that's the case hopefully she will do alright. The paed said it'd be a good idea so that she can transitin to solids and full milk when the time cones a bit easier.he warned that for now we will just have to continue to try different medications until we find one that works. He's also referring her to a specialist just in case. I was glad to have chatted with him.

One more suggestion is to put a pillow or rolled up blanket UNDER your baby's mattress so that her upper body is elevated. This often helps with the reflux at night.

Sending hugs - it's such a hard time , my lo had silent reflux , he benefited from taking Zantac and carobel thIckener in his feeds, he also wouldnt gain weight so he was put in neocate, after alot of changing milks too . Im sad to say nothing worked 100% though, we had to distract him by walking around the house to feed him and carrying him around alot, prop up the baby's bed so it's not flat, I hope u have some support from family and/or friends to get a little break, xx