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Oct 30, 2011
kavyamom
marci-kids, reflux solutions website down
The marci-kids and reflux solutions website is down and as I mentioned in another post, I was told that Buffer Babies is no longer available. Anyone know what is going on with the whole Univ of Missouri reflux institute??
Oct 31, 2011
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
I read somewhere that they did not their grant renewed?? You can email them directly and see if you can get it. If not, you can get your script changed to Zegerid. David Stock stockd@missouri.edu
Nov 02, 2011
dcd
Yeah I tried calling and I just get the recorded message: "Reflux Solutions is no longer making their products available."

I'm so upset about this and the way it's being handled. I get the impression it's an issue of funding - but it also just seems so shady and makes me nervous about the BB product. (Even though we've used it with success for 15 months now.)

Thankfully the last time I ordered BB, I did the 10-refill pack, but that will run out soon enough. So what's next? Karen - without BB or Caracream, how would I administer a PPI to a toddler? The Prevacid solutabs never worked for us, so that's not an option. We don't have a compounding pharmacy around here, so that's not an option either. I could get the Zegerid powder packs, they're just really expensive...

Nov 02, 2011
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
Unfortunately you are kind of stuck with moving to Zegerid or calling around to your local pharmacies and finding out how they make their liquid version. There are a lot of them that are making them so much more effectively than they did in the past. Just ask. I took this from another website from Marci-kids about what you are looking for in the compounding. I am not a pharmacist... Just doing a copy paste for you...

"1.Make sure that your pharmacist does not put any kind of flavoring agent in the compound.

2.Make sure that the concentration is between 2 mg/mL and 4 mg/mL. This means that for every milliliter of suspension, you are giving between 2 and 4 milligrams of drug. We also do not recommend that you give less than 3.5 mL of a PPI suspension at any concentration. This is because doses smaller than 3.5 mL do not provide enough buffer to adequately protect the drug from being destroyed by the acid that is present in the stomach.

It is important that the pharmacy does not add flavoring to the compound as it will almost certainly cause it to lose its stability much more quickly. "

Your LO has been on PPIs for a long time now, is older, and has a more mature GI tract. You may find that she is not as sensitive to how it is dosed anymore. You can hope... You might also find that Zegerid Powder packets are not as cost prohibitive anymore since its been on the market for a while now and the capsules are OTC. Never hurts to call your insurer and find out. I will let you know if I learn anything more.

Nov 02, 2011
kavyamom
Karen, thanks for the compounding info!
Nov 03, 2011
dcd
I emailed David Stock and Dr. Phillips, and this is Dr. Phillips' response:

I am so sorry but this was literally a spur of the moment decision made by the University. If you were to write a letter and forward it to me it may be helpful.

I have about 8 refill packs of BB left. I think I'm going to try to accelerate Kylie's wean-down process a bit and see how she does, in the hope that she'll be off the PPI before we run out of BB. This may be wishful thinking, but she's come so far from where we started, maybe not... If she still needs the PPI when we run out of BB, we'll try the Zegerid powder packs.

Nov 03, 2011
dcd
p.s. When I spoke to David last month, we discussed Kylie's wean-down process. He said when we get to the 18 mg per day dose (she's currently on 24mg split) - which would be 9mg morning and night - we need to start compounding the med to a 2 mg/ml concentration so that there is still enough buffer to protect the med. I guess when you get to a certain point, the ratios change. (Hopefully I'm remembering all this correctly, but it's basically the same thing Karen's note says above.)

Anyway David actually went ahead and sent me the instructions for mixing the 2mg concentration with my last order. If anyone needs the info, let me know and I'll paste it here.

I guess I'm just thankful I ended up ordering a 10 refill pack last month. I NEVER do that, but I got caught without any BB on hand and I didn't want to risk that happening again. I'm also glad I spoke to David or I never would've know about changing the concentration of the med as we wean. The situation with Reflux Solutions is upsetting...wish us luck as we try to get Kylie off her PPI before we run out of BB!

Nov 03, 2011
kavyamom
Danielle, please do paste or email me the info regarding changing the concentration that David sent you. Also, I just realized that I may not be using the right concentration. I give Kavya 3ml in the morn and 6ml at night. First of all I probably have to give 3.5ml as a minimum. Maybe easiest for me at this point might be to just give 4ml in the morn and 5ml at night and see if that makes a difference. She is ok during the day for the most part and that is why I was giving less during the day.
Nov 03, 2011
kavyamom
Danielle, why do you have to change the concentration when giving 9mg? If you gave 3ml won't that be 9mg of meds and you can use the same concentration. I give Kavya 3ml in the morn (which I thought would be 9mg of meds). Anyway, please do let me know what David told you regarding concentrations. Thanks.
Nov 04, 2011
kavyamom
Danielle, meant to actually write this...a little more clearer I hope: If you are giving 9mg (which is 3ml), the concentration is 3mg/ml which should be ok, right? I thought it needed to be between 2 and 4mg/ml.
Nov 07, 2011
dcd
Hi Sandhya,

I saw your email about the BB concentration and I'll post what David sent me when I get home. I think I misspoke - he said to start mixing it at 2mg per ml AFTER we wean her from 18 mg/day. B/c at 18 mg/day, that's still a 9 mg split dose, which means we're giving her 3mg/ml (x3) in the morning and night. At that dosing, there's still enough buffer to protect the med. But when we wean down to 15 mg/day and beyond (since we cut the med by 3mg at a time) that means we'll be giving her 7.5 ml morning and night. At that dosing, there's not enough buffer in the 3 mg concentration to protect the med, so he wants us to start mixing it at 2 mg per ml.

I hope this makes sense. I have a shaky understanding of it myself so I'm probably not being very clear.

Nov 07, 2011
kavyamom
Danielle, makes sense. Thanks. Please do post what David sent you. Anyway, now with BB not available, I might not really use the info but do post anyway.
Check with your
doctor first!