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Nov 15, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
jlh9s
HI! Are things still going well???
Nov 16, 2010
jlh9s
Thanks so much for checking, VM.

We did hit another rough patch the past few days. Not as bad as the peak of the reflux but a decline from our oh-so-promising good days last week. I can't find any pattern at all - I've been on an elimination diet and can't figure out anything we did differently. I might just as well assume she prefers Wednesdays and Thursdays to Mondays and Tuesdays (sigh).

I think the two things I find hardest about reflux are:

1. Every time I think we've got it down, it seems like we hit another bad day or two right after.

2. We try so hard with positioning, minimizing diaper changes, etc. that it's like handing a time bomb. And that part gets exhausting after a while. I think I should probably just be more in the moment, realizing that she is going to spit up and reflux some of the time and that I can't constantly worry about whether I held her at a perfect angle or should have waited 15 more minutes to change the diaper. But that's easier said than done!

I'm going to try to schedule another craniosacral just in case that had anything to do with it, and I ordered some CaraCream in case that helps reduce gas versus the BufferBabies. I also tried weaning her off one of the Pepcid doses. Big mistake! She was very cranky and fussy that day. It could just be an up or down or it could be the medicine. I don't know but I'll try once more when she's been on the BB/Prevacid combination for 4 straight weeks.

Recently, she just hasn't been nursing as well and has been crankier. Could be more gas or some kind of colic combination. I am hoping that perhaps even if the reflux does get worse to 4 months that at least the fussy evenings will go away between 3-4 months? Or like many other things, are refluxers just special and hold on to this, too?

Nov 16, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
You poor thing. I can hear the defeat in your words and I can relate. I felt about feedings like you do about positioning. I had to take 10 deep breaths and toss in a few quick prayers before picking up a bottle. I can laugh about it now but yikes was it tough then. I am not sure if I was the ticking time bomb or the bottle. : ) Yes, I promise you that it gets so much better. Time is your babies best friend. You are absolutely right, live in the moment and dont forget to live. Really the best you can do for her is to make her comfortable. You cant make her stop barfing. Janet can tell you that. Zach was a bucket puker for a long time but the Prevacid saved his throat.

The other hard thing is that when you get in the reflux tunnel you tend to blame everything, including world hunger, on reflux. It tough to sort through all the other issues that are going on, including the viral illnesses and the flu, and teething and plain pissyness that is Wednesday. : )

Hang in there, take time for yourself, find at least one friend that doesnt thing you are crazy at this point to unload on, and take up yoga or chanting if you have too. I would have recommended that you go straight for the bottle of wine, but the BFing takes that option out for you so chanting it is. Hee hee.

Nov 16, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Ps. they can be pretty gassy for the first 2 weeks on caracream/bb. Her body is getting use to digesting without the extra acid. Gas drop can help you through that period of time. Biogaia probitotic drops are great too.
Nov 17, 2010
jlh9s
Hi, VM, thanks for the encouragement. She's now been on Prevacid for over 3.5 weeks - 1 week on compounded stuff and over 2.5 weeks on BB. We've tried probiotics, but she throws up immediately anytime we've tried giving them to her. We have the BioGaia on order in case that brand makes a difference.

I called our ped today because in the past 3 days, she's lost 2 oz because she's been unable to nurse and screaming/crying so much of it. Of course, not having heard of MARCI kids before I told him about it, he suggested trying Prevacid Solutabs. So we picked that up tonight and will try that for a week and see if it makes a difference.

I called for a pediatric GE appt and the earliest we can get one - 2 hours drive away - is Dec. 17.

It's so strange that she can have such ups and downs in the course of a week with no apparent difference in anything we're doing. I just don't get it. And of course on my elimination diet, my self-soothing meal of the night is . . . roasted squash.

Nov 18, 2010
tinytanner
We have had luck with the Prevacid Solutabs even though my little guy has MSPI. I hope they will work for you. Hang in there. I couldn't believe how long it took to get things straightened out but they did after almost 2.5 months. My little guy ate 28oz yesterday almost all of it awake with an ear infection! Hope that will help you see that you will get through this and at least we are hear to listen! I know I will need ya'll again if we hit a ruff patch! Hugs~
Nov 18, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
If the buffer babies isnt working, Solutabs wont be better in my humble opinion. Its the same drug with out the protection. I wouldnt abandon the BB just yet.

So couple of thoughts... Are you sure there is nothing else brewing.. ear infection, teething, flu, etc.? It doest take much for these kids to slip back to their old ways. If they are hurting anywhere, they blame the food.

I have a 7 day rule of thumb.... Behaviors, eating, sleeping etc had to change for more than 7 days before I made any changes to meds, formulas, foods etc. That way I could distinguish the difference between reflux issues and other childhood aliments. It is frustrating and exhausting... I know.

I think you will really like the Biogaia. 5 tiny drops, no taste. You can put it a bottle, with a little babyfood or just on their binky.. which is what I did.

Elimination.... I dont know much about this because like an idiot I gave up BFing because I thought it was my milk as I was told that he did not have reflux. When it was too late I found out that he did not have MSPI but severe silent reflux. too late to go back. Now, all that said.. If you are grasping at straws and there is nothing else you can think of regarding teeting, illness, ear infection, etc maybe you could try pumping and freezing and offering one of the MSPI formulas. That might tell you if there is an unknown allergy that you arent eleminating? I think la leche has a formum like this. Maybe they have some thoughts...

Nov 19, 2010
jlh9s
tinytanner - Wow, 2.5 months! You really hung in there. I would have assumed the drug wasn't working before then.

VM - She had a good day finally today - thank goodness. I was ready to put my head in the oven if we had another day like yesterday with 16 hours of almost no nursing.

I don't think there's anything else brewing. She's only 9 weeks old so unlikely to be teething. No signs of ear infection or flu besides the general congestion she always has had which I have associated with the reflux. If she doesn't improve on the Solutabs, I can always go back to BB. I also have the CaraCream version which is supposed to create less gas. I figured since I am keeping her on the same PPI for what will be over a month that that should be telling.

For the elimination diet, I should really start keeping a food log. I don't mind giving up the dairy and will happily stay off that another 6 months or whatever it takes, but I do miss soy a lot and am hoping that this weekend, when I introduce it back in that I don't get a reaction. We tried her on Alimentum but she did much worse on it than breast milk and she also gets very gassy from the bottles. She did much better when we took her off and did 100% breast milk. If need be, I'll eat nothing but squash and sweet potatoes, but am hoping that's not what is necessary.

Terrific idea on the probiotics on the binky. She threw up with the last ones, which had to be mixed with water.

Nov 19, 2010
bellysmom
Having to eliminate dairy and soy is hard. Have you tried coconut or rice dream. They arent too bad and come in flavors.
Nov 19, 2010
dcd
Just one thing to consider since I read you are eliminating dairy - the Prevacid solutabs have milk in them. :( I'm not sure how sensitive your daughter is, but some babies react to even this small amount. Maybe keep it in mind as you trial the solutabs.
Nov 20, 2010
jlh9s
So yesterday was a good day and today was a GREAT day. I am afraid to hope that tomorrow will be good, just trying to take the good and soak it in while it lasts.

For you reflux warriors, like VM, will it always be this way? Good days followed by bad as opposed to things leveling out? The bad days scare me when they are one right after another because I start worrying that that is the status quo and it is just her reflux getting worse. Then the good days get my hopes up that maybe meds are finally working and things are getting better.

She had milk coming back up several times today but very little spit up (for her - maybe 4 times) and didn't see in pain in any of it, though the spitting up part still makes her uncomfortable; I wonder if she is remembering that it is usually painful. She also ate well which is the most important thing to me.

I would eat nothing but squash for the next 9 months if I thought it could always be like this.

I know the Prevacid pills have a small amount of dairy but so far, she doesn't seem to be reacting to them and I haven't had dairy in about 7 weeks, maybe 8, so I assume if that amount was enough to set her off, it would have by now.

I'm lucky in that there are a lot of alternative foods here, such as coconut ice cream and cashew milk ice cream. For now, I am trying to stick mostly to things I make myself so that I know there aren't any additives or unknowns that might possibly be contributing to anything.

I still keep thinking there must be something in what I'm eating because I just can't figure out why else there are such ups and downs last week and this week without any other differences.

By the way, in trying to get myself through all of this, I can't help but hope that we might be one of the lucky ones and it might start easing up around 6-7 months. But I can't find too many examples of real live families posting about that. Not sure whether it's because (a) the early outgrow cases never had very severe reflux to begin with, or (b) if you have a case like that, you probably don't continue to hang around on these boards to post that kind of experience.

I do have a couple of other questions for you experienced moms:

1. Tummy time - did you do it? without losing all of a feeding? I worry that without any, she is going to take longer to strengthen the stomach muscles that might help her reflux eventually go away, but when we've tried it, she gets sick and hates it.

2. Fussy nights - with "normal" kids, this starts to go away around 12-16 weeks. Does that happen still with refluxers or is 4-6 months just an all around hellish experience that I should be anticipating? I'm hoping that there might be some positives to offset the reflux getting worse...

Nov 21, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Seems like most kids here have good weeks and bad weeks. For Ryan it would seem like we would have 3 good ones and then 7 bad days. Thats why they call it the reflux roller coaster. Lots of ups and downs with really no rhyme or reason. The good news is that much like a real roller coaster, towards the end of the ride the highs and lows arent so dramitically different.... things start to level off. That you are having bad days does not mean what you are or were doing is no longer working... its just part of the cycle. Try not to 2nd guess yourself or change everything at once. Slow and steady wins this race.

I never bothered with tummy time and it did not set him back at all. If she is old enough to hold her held well, but her a bumbo chair instead and a excersaucer. Those are both great and strengthening their core muscles with out her having to loose her lunch.

Fussy nights... I think that tends to follow the "normal" kid routine. Depends though. Ryan was a amazing sleeper as was Janet's son Zach.

Your daughters reflux might not get worse, especially if you figure out the right meds. Have faith and take this one day and one feeding at a time.

As far as the 6 to 7 months old and out growing it... you might be right as far as your theories go. Most of us on the board went through or are going through tough stuff with our LOs. Its really hard to say.

You will get through this and likely will be better because of it. Seems hard to imagine... but you will be much more intune with your child, much more in control of the medical community, more self reliant and confident and will have a stronger bond with your child. You can do this. Try to stay in the moment.

Nov 22, 2010
jlh9s
Thanks, VM. I keep thinking that finding the "magic bullet" means that all days will be good days, but I guess that's not true... anyway, we had a really good 4th day in a row. I'm bracing myself for tomorrow! :)

And that's so good to know about tummy time. I'm definitely going to get those products. Right now, I try to make burping a slightly inclined short tummy time so she can strengthen those neck muscles. She was 97 percentile head size (25 percentile body size) when born, so it might take her a little longer to be able to keep that head up, but she sure is trying.

She was extra gassy last night. I had lima bean soup for dinner, so that might have been it. Or as you said, maybe there is no rhyme or reason sometimes. I'm still sticking to the same diet, though, since I don't want to change anything while the days are going well. I'm taking your advice and not taking anything for granted until we get at least 7 days in a row of whatever it is.

Biggest thing I care about is just that she is not in so much pain and that she can eat. If we can get through as many days as possible with just doing extra laundry, extra holding, etc., I will feel very fortunate for each such day. Of course, it's only been 10 weeks as of tomorrow. Sometimes it seems sooooooo long thinking to another 5+ months minimum of this. I can't wait one day to be able to put my child vertical with the carefree aplomb that I see in all the other mothers!

Nov 22, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
You remind me so much of myself... especially your analogies. You are very pragmatic in your approach and you still have a sense of humor. That is a good thing! You will get there... maybe sooner than you think!
Nov 25, 2010
jlh9s
Soooo happy - we had our 7th good day today. Still spitting up, but not as much and no apparent pain. She is snacking and smacking a lot on the breast, but at least she's eating, so I am happy.

I vowed after 7 days and 2.5 weeks now on this elimination diet that I would try adding soy back in and see how it works. I am fine not taking chances with dairy and just being dairy-free for the next 8 months or however long I breastfeed. Fingers crossed that things continue to be good. As a vegetarian, with limited legumes (beans tend to make her gassy), I am really missing soy. If things go well for another week on soy, then I will try corn and see if that triggers anything.

Happy Thanksgiving everyone! I'm so grateful for Lucy's good days this past week and for this forum and all of you willing to share so much information with the rest of us.
Nov 27, 2010
jlh9s
Amazing, things are still going well, today being our 10th good day! Lucy hasn't seemed to be in any pain at all from reflux during this time, and while we still have spit ups, they are slightly less than before and she is gaining weight (hooray). Also less hiccups, grunting/straining and colic.

What seems to be working is a single nightly dose of 15 mg of Prevacid Solutabs and a daily dose of BioGaia probiotics. I'm still off dairy, citrus, spicy foods, chocolate, caffeine and corn, though I've added soy back in and will try adding corn back in soon.

I have no explanation for why a single 15 mg dose in Solutab form has been working versus 22 mg via BB, but I'm not going to change anything while things continue going well.
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