Sooo much better!

[Anonymous]

So, I never really had the priviledge of writing in this forum with my first refluxer until he was nearly two years old….imagine how excited I am now with a three month old and already a post for the good news category! Our dd, Norah, has been on zegerid for about a month now and after adding a third dose each day (per MARCI kids suggestion) and then doing that for about two weeks, she is an entirely different baby. We went from being up all night –some nights didn’t go to sleep until 4 am, many nights were up from 1-6 am screaming, arching, crying, burping, spitting up– to now sleeping many nights from around 10pm to around 4-5 am. It is miraculous. I can’t believe I am watching my own biological child– a baby– sleep like she is tired and STAY alseep. It’s really mind boggling after what we went through with Lucas.

So I wanted to post because I am so happy. But I also wanted to post here because I think its important for folks to know that this is possible. I was always wanting to find a story like mine and know that theirs got better when we had Lucas. I always wanted to know it was possible to get better. Well, I want parents to know that it is possible for a baby to have pretty severe reflux (I would actually estimate that Norah’s is worse at this age than Lucas’ was– we’re talking BAD) and then go on healthy appropriate doses of medications and be like a normal baby. Going on zegerid and treating my OAL appropriately has actually significantly decreased the numbers of spit-ups and the volume of each spit up. projectile vomiting has nearly disappeared. She is now able to sleep, eat, smile, and be part of a family like a “normal” baby. I haven’t had “normal” but I can only imagine that this is what it’s like. And forgive my remark for any of you with non-refluxers….but this is sooooooo easy in comparison!

Also, since I have the joy of having TWO refluxers, I can compare the two and say that I’ve learned something important to pass along. With my first child, even when meds helped things tremendously– there was still something wrong and we didn’t know what it was or what to do, or if it was just normal for reflux to be like that. He had food problems, we call them protein intolerances– but there was this other thing going on. I can see so clearly now, with seeing Norah’s response to reflux medications– that I should have investigated other things sooner with Lucas. I didn’t because I didn’t know, but also because I thought that life with a refluxer was supposed to be miserable like that. And I was nursing at night when he had crying bouts and there’s a lot of wondering how night nursing and co-sleeping affect the stretches of time that an infant can sleep. Well, I wonder no longer and I know our severe situation had nothing to do with our night nursing. I encourage parents who already have their refluxers on high and healthy/appropriate doses of ppi drugs and who STILL have lots of problems to really investigate food allergies, probiotics and other avenues. I know all babies are different, but had I known what to do sooner I could have saved a lot of heartache in our family the first time around. I understand that Norah is feeling better so quickly BECAUSE we had Lucas and already knew so much. However, I’m encouraging parents to keep investigating when you can tell that even with treating reflux there are still significant problems. Do it as soon as you can. Don’t be afraid to check into food issues, OAL, and other issues.

Do we have a list somewhere of what could be contributing to reflux or complicating it? Laura, should we try to do a laundry list of sorts for this?

[Anonymous]

I’m SO glad to hear your news, Anne! You’re such a great resource to have around here. Thanks for posting.

[Anonymous]

Hi Anne –

That’s fantastic! I remember you from when I was on here posting about Owen, and we too are back now with refluxer #2. I totally agree with you that the second time around you are so much more prepared, know what to look for, know what is “normal”, etc.

I had Connor at his ped when he was 2 weeks old because I already saw signs of reflux, and when I said to the doc “I swear I’m not a crazy mother” he said “nope, you’ve been through this before and you’re just aware.” I thought that was great – first to have the doctor recognize that this is a serious health issue, and second for him to respect my views as a parent. I know all doctors SHOULD do this – but we all know this doesn’t always happen. I feel incredibly fortunate.

We’re not QUITE ready to post in this forum as we’re still in our two week trial of neocate and prevacid, but I woke up this am feeling hopeful with our progress. I remember when I was first on here with Owen – seeing these positive stories were so so important for my state of mind. Thank you so much for posting this, and I’m so happy to hear that things are great for you guys. I hope they stay that way from now on!

[Anonymous]

YAY! Anne! I was just thinking about you the other day and wondering how you and your dd were doing. I’m SO glad to hear that life is better all around. That’s wonderful news.

[Anonymous]

great update. and about the laundry list, I am sure Laura has a link, I think we started one last year sometime… But great news and I hope it continues to stay the way it is.

[hellbennt]

beth: I appreciate your faith in me, LOL!

but… I’m not sure I have a list like that?

I do have this:

reflux what I have learned: https://www.infantreflux.org/forum/forum_posts.asp?TID=2948&PN=2

and we can start with it, or add to it, or start something new and link to it (I think I like the last suggestion best?)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

anne:

I am so thrilled to read your news!

[Anonymous]

Gals,

Thanks so much for everyone’s support and sweet words. I’ve said it before, but this forum saved my sanity (and possibly therefore my marriage and quality of life) because of the support and idea exchange the first time around. This time around it was great to turn to friends I already knew, and just ask “hey, what do you think? or what did you do about x, y, and z” It’s been amazing.

Laura (hellbennt), I like your idea of having a new list, like you said, and have a link to the “what I’ve learned” list. I was thinking something that really could be quite simple and basic, but could list a lot of different things (and maybe links for each one to a post or to a relevant website?) for people to look into — like the OAL, food issues (we could be more specific on that one), and whatever else other parents have found to be complicating issues for their little one’s reflux. I guess I should say that hiatal hernia could be there too….haha. Anyways, i don’t mind drafting a little intro of sorts– the whole “once you’re on appropriate doses of meds and time has gone by, etc. etc. etc.” type of thing if you’d like. OTherwise, I know you are much more concise than I am (HA!) and I’m sure you’d do a lovely job!

Naomi– I’m still hand expressing at the first letdown for EVERY feeding. How long did you do that before things sort of equaled out?

Laura- (Owen and Connor’s mom)– nice to hear from you! All of our children are fairly close in age, but the babies are REALLy close! Sorry to hear about you going through this AGAIN. I had a few weeks of real soul searching and sadness when I realized it was happening AGAIN. Then I picked myself up and started taking action and things have been improving ever since. If you don’t have luck with the prevacid, zegerid is a wonderful option if your insurance covers it. I truly hope it gets better soon. After two weeks on the right dose, she was a completely different child– seriously. Is Connor on the dose MARCI kids recommends? We are still lower than theirs, but I am hoping to ask for a bit higher at her appt next week. I have been giving an eensy bit higher than her doc’s dose, but a bit lower than MARCI kids.

[hellbennt]

anne: go for it, lol, I mean about starting something- you could do a draft offline and we can figure out how best to organize it and I like the idea of links to posts, etc!

and anyway, I happen to LIKe your style of writing, very throrough!

gotta dash!

[Anonymous]

Anne,

This is great news! You have always been so supportive of me in my posts (current & the dark, early days) since we were/are dealing w/ breastfeeding & protein intolerances. I have to agree that seeing the success stories & ‘hip hip hooray’ are really important to read!

Thanks & Congrats!

[Author]

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