Prevacid…I think we were misinformed

[Anonymous]

Delia was put on Prevacid today, and as I’m doing some reading I have some concerns.
–He put her on 7.5 mg 1x day.
–He gave us 15 solutabs.
–The marcikids dose says to do 30-39 mg/day because of her weight (I won’t lie, for all her problems she’s a chunk so she is absorbing calories and whatnot, which is why it’s been so hard to get the help we need). If I follow the marcikids dose, I won’t have enough to tide us over until her next appointment January 18th.
–You’re supposed to give it before the baby eats, and baby has to have a full meal (6 ounces). Delia only eats 3 ounces at a time.
–I posted an entire thread in HELP, but I’ll mention it here–Delia won’t take the prevacid. It took half a 30mg solutab to get it in her, as she kept spitting it out. I’m still not convinced she got the whole thing, as a ton of the beads wound up on her cheek and changing table.
–He said to try the Prevacid for 2 weeks and if it doesn’t work start her on Neocate, and if that doesn’t work, back to breastmilk and just assume it’s colic and try to cope.
–He did mention that her Zantac dose was half what it should be, but didn’t want to increase it since the Prevacid was going to replace it.

Any suggestions? We’re desperate. She’s only sleeping 20 minutes at a time at night, with one 2-2.5 hour stretch. She’s napping better during the day, but she’s still very restless and sleeping lightly. She doesn’t eat much during the day, she mostly eats at night when she’s half asleep, and frankly it’s easier to feed her at night at this point because it’s such a struggle to get her to eat during the day.

[hellbennt]

please don’t listen to this doctor(?). you DO NOT HAVE TO STOP BREASTFEEDING if you don’t want to.
also it can take up to 14 days for you to see the full effects of the prevacid, so if you do not give the zantac, too, it’s as if your baby isn’t on ANY meds AT ALL. so give the zantac, too, making sure to space it 4hrs from the prevacid.

as for the prevacid: if you want to increase your baby’s dose on your own, you can ( I am NOT telling you to do this! YOU are the mama and must make your own, educated decisions!) by buying OTC prevacid. you can give the OTC prevacid in two ways:
1) give on empty stomach. open the capsule, sprinkle the beads onto a teaspoon of apple sauce, follow by a ‘meal’ 30 minutes later
2) go buy Bufferbabies and take the OTC prevacid and mix up your own batch of what turns into a liquid (compounded PROPERLY) PPI…this can be given at ANY time, w/o having to time around meals.

[Anonymous]

Is there a place I can buy the Buffer Babies, or does it need to be done over the internet? Delia isn’t solids yet, so I can’t imagine what applesauce would do to her.
I just don’t know how anything is supposed to help if I can’t getg the correct dosage! This is the 4th doc we’ve seen, and while at least this time i got “could be this, let’s give this a shot and see if it works” i still don’t feel helped. this whole family is so stressed, my 4 year old is getting put on anxiety meds because of all this! if i don’t have the right dose, how are we going to know if it helps? will it help even at the small dose.
sigh. i wish i’d done my research before but weve just been so busy i haven’t had time.

[hellbennt]

don’t beat yourself up…
one thing at time…
you can get bufferbabies from david stock, email below.
Dr Philips has helped MANY of us here & elsewhere…
he is a PharmD and is the ‘main’ researcher behind figuring out dosing of PPIs in infants & he & his team created bufferbabies…

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Dr.
Philips: phillipsjo@health.missouri.edu

Office Phone: (573) 884-0672

stockd@missouri.edu is the contact person for Buffer
Babies

573-884-0672

hellbennt2009-12-17 18:32:09

[Anonymous]

I feel your pain! I remember feeling the same way… it was awful. But don’t give up!!! I saw every doc in the city before I got onto a decent dose of prevacid (OTC wasn’t available back then). Finally when we were at 22.5mg, I saw a new doc, and when he asked what dose she was on, I told him 30mg which he just continued… it’s terrible, and I’m not suggesting that you do that, but I was desperate. Really desperate. We were also at rock bottom, not coping anymore, and I’d seen every doc in the city. So, what I’d suggest to you, is what Laura said. You can contact Dr. Phillips, even ask him to contact your GI and talk to him/her directly. He knows his stuff and so is usually quite persuasive, and always very helpful. BUT, even with buffer babies, the dose has to be high enough. We went for 9 or 10 months on a low dose, I can’t remember exactly, but by then we had such a bad feeding aversion on our hands that nothing helped until we got the meds under control. I know how disappointing it can be to go from doc to doc trying to tell them something that they don’t seem to want to hear. I had a 2 year old at the time when Hailey was in the thick of it, and all my time was spent consumed by caring for Hailey. I felt terrible and quite depressed about the whole thing. But don’t beat yourself up about it, you’re doing the best that you can, and NO ONE will EVER get it unless they’re put in the same situation. Reflux is something that’s often belittled because it can be common and very mild. People who deal with spitting up think that it’s the same thing, and then belittle what you’re going through. We all know that it can be living hell on earth… that’s what I felt like at the time. It was exhausting and I felt alone. But you’re not alone. We all get it here, and we’ll do our best to help you. So please, get someone to give you a big HUG and give yourself a break. You’re doing a great job!

[Anonymous]

About your question, will it help at a low dose?… I think that a low dose, is better than no dose. But for some babies, the low dose won’t be enough to shut off enough proton pumps, so they’ll still get acid, and hence they’ll still have pain and symptoms.

[Anonymous]

i can tell you now, i feel belittled. a lot of people don’t get it. my sil thinks i can sleep train dee at this point, my mil thinks we should be able to force her to eat more than 3 ounces over an hour period, and its just blah.
i emailed for the buffer babies. i want her on the correct dose, especially since this dr wasnt convinced it was gerd, he just said well treat for gerd and if it works keep going, or else put her on neocate.
i pump and bottle feed full time and will be weaned from the pump after new years. the issue is the 2800 ounces i have in my freezer–if she goes on neocate, all that hard work for nothing. i can donate it on milkshare.com, but my (literally) blood, sweat, and tears was to give MY daughter the best, you know? that sounds so selfish but i cant accurately describe what weve been through with bfing and then pumping.

[Anonymous]

We also had a freezer full of pumped breast milk! I refused to waste it, and I couldn’t even bear not to use it, so I gave it to her by bottle even though she gagged and vomitted most of it back up. I don’t know that it was best, but it’s what I did anyhow.

[hellbennt]

chiming in late, but: hang on!
you do not even have to THINK about neocate yet!
first there is the medication and then, if that isn’t the whole picture, then you can change your diet to make your milk like neocate!
so please try to hang in there!

[Anonymous]

I feel your pain. My DD, now 9 month and still take reflux meds, was a night feeder for about 6 months, and was and still is a horrible sleeper due to reflux.

From our experience, we started her on 7mg/a day at 3 month old and that did NOTHING for her. We then increased it (we did it ourself after reading Marci kids website) to 15 mg once a day. That helped quite a bit in her eating. She went from drinking 10 oz a day to around 16-18oz a day. Still had issues with frequent wakings so we gave her 7mg before her last bottle at night. that helped significantly until for some reasons she became immuned to prevacid for a while.

ANyway, I never stop breastfeeding her. I omit all diary and soy products out of my diet, and that help a lot with her constant crying. From what I know, Breastmilk is the best for babies with reflux and MSPI.

good luck.

[Author]

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