How good does it get?

[Anonymous]

Hi everybody,

I’ve been posting here for a week or so. I’m new to reflux – our DD (8 weeks old) was just diagnosed a couple of weeks ago. She’s on Zantac at the moment and we’re using Alimentum formula. Things are improving with the Zantac but it’s far from great. We have to hold her in our arms about 21 hours a day, including when she sleeps. She is still having painful reflux (although not nearly as much as before we started the Zantac) even when we’re holding her upright.

My question is how good should I expect things to get? If the meds are working properly can I expect her to be a “typical” baby? Will I be able to put her down for naps and have her sleep 1-2 hours? Will she be able to sit happily in her bouncy seat while I eat lunch? Will I be able to hold her without having to do an elaborate “baby dance” to keep her from crying? Or does the reflux always keep them from being truly content even when it’s under control?

My first DD was high needs so I know all about fussy babies. However, I get the feeling that underneath all of this reflux my DD is generally a laid back baby. I want to know if my expectations of what the meds can do are too high or if I should keep pushing the doctors to try other things until I have a happy baby. TIA!

[Anonymous]

Karen – have you spoken with your doctor about using a PPI? We actually
didn’t need one, but MOST babies with bad reflux do – works a lot
better than Zantac.

At this point, Marisa is a “typical” baby MOST days. She tends to sleep
about 9-9.5 hours straight at night (early riser unfortunately) and has
two naps of 1-1.5 hours and one short catnap of about 30 mins. She
still is pretty needy and demanding of attention but that’s partly her
personality – but she is a spitfire and ton of fun too.

If Tess is still having a hard time with reflux, I would definitely
speak to your doctors about starting on a PPI. I’m sure others here can
provide more insight into that.

[Anonymous]

If you get the reflux under control, you will have more “typical baby” days like Karen discussed in her post. But you will be on the reflux rollercoaster, so maybe things are going well , then you get a few bad days in there. We used to be on a 9 hours straight at night, and 2 1.5 hour naps schedule, but now things are all crazy and we are trying to find her right cocktale of meds. I would def. think about using a PPI. There’s alot of info on zantac, how babies plateau on it and it is very weight sensitive. Hang in there! I know all about the baby dancing, I think it is keeping me thin!

[Anonymous]

I too am well versed in baby dancing…though it doesn’t seem to helping my weight any! Hang in there, hopefully once she’s on the right dose of meds there will be less of “those” days and more happy days- that’s what I tell myself all the time.

[hellbennt]

with the right medications and the right doses you will be AMAZED at the difference in your baby!!!

I truly did not know that a happy baby was underneath the shrieking howling nightmarish blurr of the beginning of this reflux stuff!!!

please find a moment to read through my welcome/intro, as it really does address even this question you’ve posted https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1

~laura

ps: BABYWEARING!!!!!!!!!!!!!!!!!!! https://www.infantreflux.org/forum/forum_posts.asp?TID=1044&a mp;PN=1

[Anonymous]

Once Kaelyn’s reflux was under control, she was pretty close to a “typical” baby. She slept in our arms for naps until she was 8 months old, but I really think that if we’ve increased her prevacid before then we could have gotten her into her crib for naps. As others have mentioned, she still had her bad times, but she was much better overall.

[Anonymous]

Your story sounds exactly like ours until our ped put Zach on
Prevacid. The Zantac helped some but the PPI did wonders.
It took about 11 days to fully “kick-in” but then we had a completely
different child. You will be surprised, someday you will find
“typical”. Hope that day is soon….good luck.

[Anonymous]

A ppi drug could really do wonders for you. It certainly did for us. With that said, we’ve had a lot of sleeping issues, but I would say that it seems typically that the sleeping improves on the right dose and right kind of meds, although some reflux babies really have a hard time with sleeping for quite a while. Lucas takes zegerid, a relatively new ppi drug, and we’ve been VERY happy with it. Milestones like sitting, crawling and walking usually help to alleviate symptoms, and often babies grow out of their reflux by 6, 9, and usually 12 mos.

Have you looked into any issues with foods? What you are describing also sounds like your lo could be MSPI- milk and soy protein intolerant. My lo is, and we didn’t really address it until he was 8 months old, which was a HUGE MISTAKE! If I had just dealt with that possibility right away, it would have saved me months of misery. If you are breastfeeding, this will mean taking all dairy products out of your diet, as well as soy products. If you aren’t, then it will mean going onto a formula that has no dairy or soy ingrediants, and they are much more expensive from what I hear. But, having a happy baby is priceless, right? HEre’s a link so you can read about MSPI and allergies…

http://www.disa.com.au/

If you are bfeeding, the elimination diet is very difficult for a lot of people initially, but once you see the difference in your baby, it’s like you wouldnt’ go back to those foods for ANYthing. It becomes quite easy after a while, I’ve been dairy, soy, beef, fish (I can’t think of what else now!) free since June of 2005. I am just now taking wheat out of our diet and my son is sleeping much better. Again, it’s making me kick myself for not trying this earlier as well. There is a forum on this message board just devoted to MSPI, and there are all sorts of recipe ideas, and food ideas there. I’ve posted a lot about it, and you can do a search under my screen-name as well. I would look into the ppi option, and then definitely remove the dairy and soy to see what happens. Also, many peds don’t want to deal with ppis, so if you aren’t already seeing a pediatric gastroenterologist, you should probably ask for a referral to one. They are the ones who know a lot about going onto ppis nad dosing. Here are two web-sites with info on ppis and other reflux drugs:

http://www.marci-kids.com

http://www.ppiknow.com

Welcome to the reflux forums! These parents are totally amazing.

[Anonymous]

I was just coming here to post the same question. What should the expectations be on a PPI. Totally symptom free? If they have symptoms once in awhile, is that normal and good enough?

Laini has been on zegerid for 5 days. (Neocate only as well). She responded very well to it. Gaining weight, sleeping much better, and happy, no more crying.

Until last night when she had a really bad episode for no explained reason. She had dsyphagia and reflux really bad.

Is that normal on a PPI or does that mean I need to look into increasing her dose?

Are PPI’s really weight sensitive…those of you who are on them, do you keep platuoeing and having to readjust your dose?

Just when I thought I had her stabilized, I feel like we are always starting over and will never be able to do a food trial.

[Anonymous]

Angie,

I am brand new to this group and wondering the same things. My son has been on a liquid PPI for 4 weeks and I thought he was doing better, but now we are seeing a lot of the symptoms come back, especially in the evening. After reading other posts, I’m now wondering if he should be receiving another dose of the prilosec in the middle of the day or maybe it is weight sensitive. I don’t have the answer to your question, but I am confused with you!

Son–14 weeks, acid reflux and dairy protein allergy
Breastfeeding on dairy-free diet
Liquid suspension prilosec, 2x a day, total of 10mg

[Anonymous]

Angie~I think Zegerid is great but if this is your first PPI I would definetly give it more time, at least 2 weeks. I would make sure that 20mg is appropriate for her age and weight and how often are you giving it; 2-3 times a day. 3 times a day works great for my daughter. PPI’s are weight senstive. I don’t beleive that you can plateou on them like an H2 blocker but the dosage does have to be increased with weight. If she is not on the proper dosage then you still will not see a good response after 2 weeks. It should be better but no great. Once Emma was on Zegerid at about 8-9 months I do have to say her reflux dramatically decreased. We have had the dosage increase 3 times I believe.

Rubicube~Prilosec is a weight sensitive also like any other PPI but I do believe that the suspension has a expiration date. Emma was never on that but you might want to do a search on this site or go to http://www.marci-kids.com to find out about that. It also says how much dosage is appropriate for your babies weight and age. Dr Phillips also recommends giving 3 dosages instead of 2. Also some babies respond differently on each PPI. But I would check on the other stuff I mentioned first

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