silent reflux and meds not working?

[kezzmo]

hello everyone! I was wondering if anyone would have some advise for me. I have a baby girl who is 3 months old who is bottle fed. She has had really slow weight gain since birth she weighs 4.4 kilos (born at 3.5). At first she fed really well on s26 gold until it made her extreamly constipated so she was put onto Heinz Nurture which fixed the problem but she was still only going every 3-5 days. After a while i noticed she started crying during feeds and arching her back and eventually she would refuse feeds here and there. She then developed a rash on her face, neck and chest and i was told by the Health nurse that it could be a cows milk allergy and to switch her to a soy milk. It seemed to go well for about 3 days and then she refused her feeds all together. She was admitted into hospital and tube fed for 7 days. They came to the conclusion it was silent reflux that could be caused by a milk protein allergy so they put her on Neocate formula with a thickner and 2.5mls per day of omeprazole and 1ml of mylanta 4 times per day. This seemed to start working after a few days and we went home from hospital. 3 days later we were back with the same problem still refusing feeds, back arching, screaming during feeds, gaging, lots of hiccuping etc. The weird thing is through all of this in between feeds she is the perfect little angel and you wouldn't think anything was wrong with her. The hospital started to think it was bahavioural and we were seen by a speech pathologist but they could see anything wrong. I was referred to a paediatrition and he doubled the dosage of the omperazole and put her on lactalose to help with the constipation. After 5 days on the lactalose and still no poo he put her on dulculax SP which is a bowel stimulater 3 drops per night. He said she has a lazy bowel and that might be contributing. that solved the poo problems.
We had a really good 2 weeks where she put on 200 grams is 5 days which is more that what she put on in a whole month! i was so happy i thought it was finally going to be fixed. Then all of a sudden she started refusing her feeds with the same old story! The paed then put her on zantax 1.2ml 3 times per day as well at the omprazole 2.5mls 2 times per day. She has only been on the zantax for a day so we are still waiting to see any results from it. I feel so terrible to be having to give all this medication to such a young baby. I guess my questions are how much higher can the doses go because to me it seems quite hight already? I have asked for further testing but they tell me because she doesn't vomit it rules out alot of problems. What else is there if this medication doesn't work? Is there anyone else out there that has their bub on both zantax and omeprazole? Does anyone have any advise to give me. I guess im fairly lucky in one respect that my baby doesn't scream the place down non stop it's only when she is feeding. She just never seems hungry she will go all day with out having more than 30mls per feed and it wouldn't worry her the slightest. She also feeds alot better during the night. I guess its because she is more relaxed??
I guess im starting to get frustrated and dreading the feed times and i'm getting more and more worried as time goes by this has been going on now since she was 4 weeks old. please help!

[Nowhere]

Hey

Sounds like there is ALOT of room to move with the losec dose as she is on a really low dose so that would be somethig to talk to the pead about.

With the slow bowels as well and needing the duciolax drops they really should be innvesitgating as to why they are slow, Lactolose isnt a good option by the way for a bubs that cant tolerate milk as it has lactose in it, we use movoacol and ducolax ( dd has a spastic bowel).

Are you seeing a GI as well as a pead if not then maybe that would be an idea, certainly doing some testing may be helpful to see what you are dealing with

Another thing you may be able to try is feeding her while she is asleep sometimes reflux mums manage to sneak feeds in when they are sleeping, I didnt work for us but others have had luck, Another option is t syrgine small amounts of feed into her mouth throgh out the day that is what we did with DD

[elleandsam]

We have had DD on Zantac from 6 weeks, she's now 20 weeks. It took about 4 weeks to see any results. So I'd stick with it. It's only been 1 day.

We also had absolute bottle refusal and we found wrapping her to feed, bouncer her on our knee while she fed and even putting her in a vibrating bouncer to feed helped. I've just upped the amount of formula in her bottles because after 3 months of refusal, she's now wanting more and more.

:hugs: this all must be so hard for you, and I hope things get better soon.

[EdensMama]

Hey there! Firstly, huge hugs- this is so hard when you're trying to work out whats going on! My DD had severe reflux, milk protein allergy, delayed gastric emptying and a complete oral aversion, - I so know how you must be feeling right now! :hugs::hugs:

Couple of questions/suggestions for you:

1. Do you have bubs on Neocate and a normal thickener like Karicare thickener? Just that if she does have a true milk allergy, the Karicare is not an appropriate thickener for an allergy bub. This could be making things a little worse. It also could be contributing to the constipation.

2. Will bubs tolerate Neocate without the thickener? I found this to be a far better way forward with our DD. It really helped to improve her bowels. Our paed also put her on massive doses of lactulose for certain periods of time.

3. If your DD does have a delayed gastric emptying problem, maybe ask your paed for a better meds regime I think. We were put on Motilium for a while and that made a huge difference.

4. Maybe look at the Losec dose. DD was on 20mg per day at one stage to get on top her her reflux. If you're only on 5mg per day(2.5 x2) that is pretty low.

5. With the Losec/Omeprazole, are you using a suspension or tablet form? I found the suspension never worked for us and the tablet to be a far superior form of dose.

6. Maybe look at bottle and teat combination? Lots of reflux babies become very very picky about what is put in their mouths and therefore the bottle and teat thing can make a huge difference.

I don't know if any of this helps. It can be so draining looking after a reflux baby plus looking into what is actually going on. :flowerz:

[kezzmo]

Thanks everyone for your replys you have given me some options to think about. i really apreciate your help!
Bub is on neocate with karicare thickner so i might take your advise and try her with out and see how she goes. I don't really think the thickner is making any difference anyway.
foFr the first 3 weeks the omeprazole was a suspension but she has been on the losec tablets now for a couple of days.
We have tried all different teats and bottles, i was initally using tomme tippy close to nature bottles and she was going well on them but then when she went to hospital i wasn't aloud to use my own bottles due to hygeine reasons aparently. so they put her on the standard bottles and teats and now this is all she will take.
I don't know if it is a milk protein allergy reaction because she has been on neocate now for 4 weeks and it has made no difference still has some of the rash too.

[DoneAndDusted]

Hi:hugs:

Just quickly, I totally with what the others have said and and can take some time to see the affects of the meds, however Zantac is faster acting than the Losec. I just however wanted to add that that is you still feel the Losec and Zantac are not working there is other meds out there ie Nexium or Zoton and EleCare is another amino formula you could ask to trial.

Also maybe a long shot but really sensitive bubs can react to the enteric coating on the tabs so you can run them under the tap and wash/rub it off, I've also heard of some bubs having problems with the generic losec tabs, I think do to artificial colouring??..

Hang in there

[kezzmo]

hey everyone thanks heaps for all the replys.:).. the zantax and the losec seems to be working the only thing is she is still VERY wriggly, plays with the teet and coughs when im trying to feed her. I have tried so many teets and bottles like tomme tippe close to nature, dr browns, avent, just cheapo ones and happy baby steady flow it's cost me a fortune but nothing seems to make any difference! Do you think it is still the reflux making her so wriggly or somthing else? Would she maybe not like the neocate formula? She is starting to gain some weight now 200 grams last week and 100 grams this week so i know im getting on the right track.

[EdensMama]

Sounds a little like the flow of the teat might be an issue- it often is for reflux bubs. Have you tried the Y Cut Pigeon Standard Peristaltic Teat at all? This was a saving grace for us as it allows her to control the amount coming out at any given time.

Just an idea...??

[reAllytee]

I won't add anything on the meds & formula because everyone else has covered that & it seems like you are getting on track as you say but wanted to add with the teats try the Y ones edensmama suggested or the cross cut teats by Tommee Tippee as they not a flowing teat, bubs needs to suck in order to receive the milk whereas I think a lot of reflux babies can't cope with a flowing teat as they need to break etc.

Hopefully you will find things settling even more so in the coming weeks, reflux along with intolerances/ allergies & other gut issues is tough going hang in there :hugs::hugs::hugs:

[kezzmo]

I have tried the dr browns Y cut teats but she seems to struggle getting anything out of it.. she would fall asleep and drink hardly anything. I did take her to the chiropractor that some people have suggest in other forums and oh my gosh 4 days later i can really notice a difference! She still is a little wriggly towards the end but not nearly as bad. Not sure if the meds have started to really work now or if it was the chiro we go again tomorrow. Hopefully it stays this way! Im really not looking forward to solids :no: Thanks everyone for all your help i really appreciate it!