Infantreflux.org | Compounded Prevacid Administration

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July 26, 2007 at 7:57 am #39873

Anonymous
Inactive

Hi I am new to this forum. I have a 15 week old preemie, 4 weeks adjusted, who is on compounded Prevacid for reflux. When she was in NICU, they gave her meds to her in her bottle of breastmilk and told us to do the same (about 40ccs), twice a day. So, since discharge 1 1/2 months ago, we have been giving it to her exactly that way, during her 6 o’clock feedings. I just found out that she is supposed to be getting it on an empty stomach and by itself from another preemie mom either 1/2 hour before feeding or 2 1/2 hours after feeding. I can’t believe that they told us differently in NICU. No wonder my baby is still having reflux issues. My question is, for compounded Prevacid, should it be flavored? If so, what flavor works best? Is there anything else that I should know about it? Our pharmacy puts an expiration date on for 30 days, but I have seen some posts that it is only good for 2 weeks. Which should it be? Thanks in advance!

July 26, 2007 at 8:12 am #39874

hellbennt
Keymaster

hi there!

welcome!

compounded prevacid can be given at any time it doesn’t have to be on an empty stomach- prevacid solutabs, packets and capsules need to be given on an empty stomach, not the cpmpound…

the trick is to get it compounded correctly-

you have to insist that the pharmacist ‘humour’ you and do it how you ask

and/or insist that the dr ‘humour you’ and write the prescription out exactly how you tell her/him to

here’s how to tell them: compounding from lori: https://www.infantreflux.org/forum/forum_posts.asp?TID=7855&TPN=1

yes it does need to be made every 2 weeks w/ no flavorings- you can ask for flavoring on the side & flavor each dose seperately

I have a lot more to say & it’s here: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&PN=1&TPN=1

and http://www.marci-kids.com is very helpful as well!

glad you found us!

~laura

July 26, 2007 at 8:28 am #39875

Anonymous
Inactive

Hi and welcome!

I just wanted to say that I’m glad you found this forum because it is amazing. The mamas here are sooooooo supportive and you’ll find so many answers to the HUGE amount of questions that go along with having a refluxer. It’s a rollercoaster that’s for sure. I hope the compound prevacid works well for your little one! It’s tricky using compounds just because so often they are made incorrectly. If you think about switching,the solutabs are super easy to give(although you have to time them with meals which is a big drag)and they’re made right everytimeHang in there, and hopefully the right dose and meds will give her relief soon.My baby was a preemie too!

July 26, 2007 at 9:11 am #39876

Anonymous
Inactive

Hi there. There’s a lot of incorrect info that flies around when they’re talking about PPI meds. But the others are right- IF your compound is made correctly than it doesn’t need to be given as the other NICU mom told you because it’s called immediate release. Delayed release PPIs (like the solutabs) need to be given on an empty stomach and followed up with a meal 30 minutes later.

If your PPI isn’t working I’d venture a guess that it’s not being made correctly (see Laura’s reply) and/or the dose isn’t high enough. It’s VERY difficult to get the compounds made correctly. Most pharmacists will add flavouring and tell you it’s okay, or they won’t put enough buffer, or they won’t tell you to shake it REALLY well and refrigerate. If you do go with the compound, I’d get it done as described in Laura’s reply and ask for a printout of all the ingredients in it to make sure that they’re doing it as you’ve asked.

My daughter was on a compound that wasn’t made correctly for a long time, and she developed a terrible feeding aversion and was miserable for way too long!

Good luck.

July 26, 2007 at 10:12 am #39881

Anonymous
Inactive

I called the pharmacy and my DD’s prescription is .7ml BID of 3mg/ml solution. The pharmacist says that she is mixing 45ml sodium bicarbonate to 135mg of Prevacid. She says that this is a 7.5% sodium bicarbonate, so clearly this is not what is recommended. She says taht a compounding pharmacy may have something different, but that she has never heard of 16.8% sodium bicarbonate. What should I do? I just got this prescription filled yesterday. The prescribing physician is her pulmonologist. Should I ask him to prescribe something different for her? What is the better solution for my almost 4 month old (1 month old adjusted)? She gets breast milk, mostly bottle fed, and it is thickened with Simply Thick. She does fine with feeding and will als breast feed, but has more reflux when doing so. Would another form of Prevacid be better for her? Or another drug all together? The pharmacist has heard of Zegerid and says that she has some adults on it, but no children/babies, and olny has the capsules, not the packets. Thanks so much for your advice!

July 26, 2007 at 11:14 am #39882

hellbennt
Keymaster

if the pharmacist is willing to work with you, you might want to go ahead & have her make it how exactly how you tell her to or, if she needs it written out by the dr, then I would FAX a note to the dr telling her/him what is going on- thank dr then say you spoke w/ pharmacist & need dr to write the prescription this way: ___ . then provide pharmacist’s name & fax number to fax the prescription- follow up to dr’s office w/ a phone call & do same for pharmacist….

Lori will tell you otherwise, as she hasn’t had good results w/ pharmacists making compounds properly…but it might be worth it if she will make it how you tell her to and if she’ll give you a print out of what exactly is in there (there should be no ‘extras’ as lori lists from the link in the above post)

July 26, 2007 at 11:24 am #39884

Anonymous
Inactive

The pharmacist said that they only have 7.5% sodium bicarb and has not heard of of 16.8%, so suggested that I go to a compounding pharmacy. Also, if the compound is only good for about 1 week, how do I get them to remake it every week? The pharmacist says that it is good for 30 days. Also, is the dosing right? She gets .7ml and the info that I read said 7ml, which is more accurate for her. She is only 7lb. Thanks! Hollye2007-07-26 11:32:32

July 26, 2007 at 11:29 am #39885

Anonymous
Inactive

Hi and welcome!

I just wanted to say that we are using the compounded prevacid as well. It has been wonderful for my son, and I like the fact that I can give it without worrying about timing it with meals, although I do try to give it on an empty stomach as there’s less chance of him spitting it up. We’re one of the lucky ones and haven’t had a problem with how the compound is made, but we do only get 2 weeks worth at a time. Good luck with everything!

Bryce’sMom2007-07-26 11:29:30

July 26, 2007 at 11:51 am #39887

hellbennt
Keymaster

I would work on getting the dose ‘right’ and maybe try solutabs until you can get the compounded prevacid made correctly?

.7mls is not even 3mgs if the solution says 3mgs per ml?

anyway, the way you would get it filled every 2 weeks would be for the dr to write it out this way on the prescription

July 26, 2007 at 12:04 pm #39889

Anonymous
Inactive

Hi and Welcome. We are on solutabs so I can’t say much about compounding and from scanning everyone’s replies, it sounds like they have covered it. Hope you are able to find the answers that you need here. This place is a lifesaver.

July 26, 2007 at 2:00 pm #39900

Anonymous
Inactive

I posted at the same time you did, so I didn’t see the last post. I guess it probably depends on the pharmacy, but we don’t have to get a prescription for two-weeks worth, we just ask the pharmacist to only fill half of the prescription at a time and he’s fine with that.

July 26, 2007 at 2:51 pm #39904

Anonymous
Inactive

I agree with Laura to first try to get the dose increased.

If you’re going to do the compound, I’d try a reputable compounding pharmacy in the area. Ask to fill it EXACTLY as you’re asking and hand them the marci-kids instructions. I once told them not to add anything else b/c my daughter had allergies. I also told them that if they couldn’t do it that way, then I’d take my business elsewhere. They still added sweetener, which I only found out by asking for a printout of all the ingredients, something I recommend everyone asks for when getting a compound done. The funny thing, is that this pharmacy was supposed to the best in our city- very upscale looking and fancy like an apothecary- and I just found out that they were closed down for selling fake viagara! (sorry for going off topic!)

July 26, 2007 at 3:29 pm #39907

Anonymous
Inactive

I called our pulmonologist and he said that the sodium bicarbonate percentages don’t make a difference. I then called a compounding pharmacy and the pharmacist has the instructions from Georgetown Hospital (we live outside of DC) and he says that they are told to make it to 8.4% and can”t imagine why anyone would make less than 7ml, so has not heard of 16.8% sodium bicarbonate being used. He also said that their standards indicate that as long as it is refrigerated, Prevacid is stable for 30 days, unrefrigerated it is 14 days. To get the 16.8%, do they have to order something special? If I decide to transfer my prescription, can I do that without getting a new one from the Dr.? Will my insurance cover it if I just got her prescription filled? Another preemie mom whose baby is the same size and age as my baby said that her daughter is on very similar dosing to mine (1ml BID of 3mg/ml). What should the dosing be increased to? My Dr. I don’t think will entertain that, as he recently increased her from .5ml of 4mg/ml to .7ml of 3mg/ml, which converts to .525ml of 4mg/ml and the pharmacist said that it is not enough of an increase to make a difference, so I called and asked if that was the dosage that he wanted and he said yes.

July 26, 2007 at 5:19 pm #39909

hellbennt
Keymaster

there are 2 ways you can look at doses:

1) http://www.marci-kids.com

2) Or, start w/ what was ‘high’ 4yrs ago (& should be sufficient to start), which is 3mgs of prevacid per kilo (marci-kids is probably higher but I personally think this is a fine place to ‘start’)

3) if your dr won’t do at least 3mgs per kilo

as for the sodium bicarbinate- from the link of how to ask for it compounded, there are instructions for 2 ways to ask for it- 2 different percentages- I don’t know this by hear- go to the Introduce Yourself forum, click on ‘groupie intro’ (then bookmark it for future reference) and scroll down to ‘Prevacid 101’

from there, there are links to how to ask for it to be compounded (probably the same info as the link I gave you before, but maybe not?)

use your baby’s symptoms to request dose increase: pain, howling, shrieking, arching back, Sandifer symptoms (there is a link to what Sandifer symptoms are from ‘groupie intro). medication will not stop spit up, so I woudn’t use this as an indicator of needing more meds…the medication helps with pain.

HTH (hope this helps)

~laura

July 26, 2007 at 5:27 pm #39910

Anonymous
Inactive

Our compounding pharmacy had instructions to make it at 16.8 percent sodium bicarbonate. The 7ml doesn’t refer to making 7ml at a time, it means taking less than 7ml PER dose!… which all of our kiddos are. The most I’ve ever heard of prevacid staying stable is 2 weeks refrigerated if made well. Even our compounding phamarcy said two weeks for unflavoured prevacid. Marci-kids did research on these compounds and found that they start to break down after 1-2 weeks. The pharmacy doesn’t need to order anything special to make it with 16.8 percent sodium bicarb. They just need to add more sodium bicarbonate, from what we were told. I don’t know about your script and the insurance. About the dose, your doctor is giving you a very low dose. You’re right, your doc didn’t change your dose much at all- just by 0.1mg more per day… all he did is change the way it was made for the most part. The other preemie mom you’re talking about is actually getting a lot more medication than your little one- she’s getting 6mg/day (which is still low) and you’re getting 2.1 ml per day. The BID means twice daily. You might want to check out http://www.marci-kids.com. They have lots of info on dosing of PPIs, though they take a more aggressive approach to dosing. Our children’s hospital is very conservative, and they recommend 3mg/kg/day… that’s on the low side as well, but higher than what you’re giving. I don’t know too much about preemies, so I don’t know if dosing changes in preemies, but I think that it’s really weight dependant. I don’t really know what to suggest. Maybe you can talk to your doc about upping the dose, print off some marci-kids stuff, or maybe someone here can recommend a new doc. Good luck.
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