Q about zegerid dosing./marci-kids

[Anonymous]

I hope this post doesn’t get me in trouble, I just want the best for my daughter (so please no flames!). A friend of mine told me about another reflux site (IRD is the acronym) and I went and checked it out because I want to read as much as I can about this new thing affecting our lives (reflux). I noticed that very few people’s babies there are on Zegerid and that the marci-kids site is hardly mentioned at all. One person (I think it was a moderator) said that the info on the marci-kids site should be taken with a grain of salt since it is run by the creators of the drug (implying that they want us to up the dose for their profits).

What are your thoughts on this? My doc had prescribed Zegerid (20mg packs) for my DD (now 7 weeks) in the amt of 2.5ml twice a day for the first week or two, and then to drop her to only once a day once it was working. Well, based on this site and the raves over the marci-kids info I asked my pediatrician if I could up my daughter’s meds to the marci-kids dose (3.5ml 3x a day). she was sketchy, but said I could try it if I wanted to.

So I did and my daughter seems better. But not like “whoa, she’s cured”, know what I mean? She’s still fussier than most babies, still gulps the second she’s flat on her back (followed by crying) and still screams bloody murder in the carseat.

So now I’m doubting myself and wondering if I should go back to what my pediatrician originally prescribed if it’s not going to be a wonderdrug for us at the high dosage. I guess I’m just worried that I’m putting too much non-FDA approved (for babies) stuff into such a small innocent body.

Any insight is greatly appreciated!

[Anonymous]

i am not a fan of IRD. the mods on that site do not know enough about marci-kids research and they bash it continuously without doing further research on the topic of higher, more frequent PPI dosing in infants.

the upping the dose for their profits is not true at all. even before dr phillips created zegerid, he was still doing research on PPI doses in infants and studies that prove infants need higher PPI doses. they were still advocating for higher doses of prevacid and prilsoec, and they get no profit from that at all.

second, dr phillips sold the rights of zegerid to the pharmaceutical company santarus, and as far as i know THEY get the profits.

lastly, you will notice that many many babies on that site are not getting full relief on their current doses. i have compared both sites, and what i have found is that the babies on the marci-kids dosing are geting much bette reflief than the babies on the lower doses.

i see pots there all the time where people ask why the “ppi isnt working”. a lot of the time the answer to that IMO, is that they havent tried a high enough dose yet.

and for my son, he does not respond to doses lower than the marci-kids dosing. i have tried to lower his dose at one time, and it was a complete nightmare.

JMO.

nataliachick72007-4-16 17:32:24

[Anonymous]

thanks for your reply Natalia– reflux is still very new to me and i appreciate any advice i can get!!

[Anonymous]

ViolettsMama wrote:

I guess I’m just worried that I’m putting too much non-FDA approved (for babies) stuff into such a small innocent body.

Any insight is greatly appreciated!

Dr Phillips created zegerid in a powder suspension form for babies. he works with babies at marci-kids. as for the fda, they just slapped on whatever directions were given to the original prilosec-which is in a form for adults. (capsule). im pretty sure the fda doesnt want to fork out the money to do studies on zegerid in infants. they are petty cheap like that, IMO. besides, i dont agree with many of the things that the fda claims.

as for the safety in infants, im not sure if you have read though all the information on their research, but it is virutally impossible to OD on a PPI. they only work on the cells in the stomach that create acid. they are known to be very safe meds.

[Anonymous]

no probelem. i feel very strongly about this, i hope i didnt offend anyone. this is just from my personal experience as well as from reading about the experiences of babies from several reflux boards.

[hellbennt]

from all that I’ve learned in the past 4 years, there are not very many drugs that are approved by the FDA for babies…someone please correct me if I’m wrong…

as for marci-kids: they promote higher PPI dosing because of their research. I ‘found’ caracream 4 years ago & it was a godsend. my ped GI didn’t quite dose as high as marci-kids would have recommended (the actual marci-kids site didn’t exist at that time, however, I was in touch w/ dr philips at that time and he was aware of jonah’s dosing)

research & education is key so that we may be the best advocates that we can for our babies!

I always post that if a dr won’t prescribe whatever it is that marci-kids recommends, then s/he should AT LEAST dose 3mgs per kilo, as that was considered to be a high dose 4 years ago…most drs won’t even do THAT.

[Anonymous]

i too hope i didn’t offend! i’m not trying to stir up trouble at all– i just want a happy baby 🙂

thanks for our reply Laura!

[Anonymous]

I’ve visited another site and like Natalia said I see a lot of posts from moms who are asking, “why isn’t the PPI working?” I read one post in which a mom tried to reassure another mom and she said it took MONTHS for the Prevacid to work for her child. I thought to myself, it probably never worked. Her baby probably just outgrew reflux. It makes me really sad so I don’t visit that site anymore. They seem to be biased against marci-kids.

I’m sure some babies do fine on lower dose than what marci-kids reccommends, but my son definitely needed the marci-kids dose. He was miserable and it got to a point where he would only sleep feed. The marci-kids dosed turned things around for him. So I guess I am biased towards marci-kids, but I do try to not be pushy about it.

As far as safey is concern, I felt comfortable with the high dose of Prevacid once I learned that these meds are very specific; meaning that they only work on the actual cells that produce acid. That’s why the side effects are minimal and you can’t really overdose your baby. This is what reassured me:

http://www.marci-kids.com/pdfs/dosingppis.pdf

How long has she been on the marci-kids’ dose? I hope she continues to improve. For Myles it took 10 days, but it seems to take about two weeks for most babies.

ndrose2007-4-17 9:29:6

[Anonymous]

Hi! I just wanted to put in my opinion here since I am a HUGE fan of Marci-kids. Dr Phillips helped me so much…even when Addy was on omeprazole pharmacy compound. He even called me directly one day to check on Addy’s progress on Zegerid. As you have noticed on the marci kids site, it gives guidelines for all reflux meds and not just zegerid..if they were trying to make a profit off of zegerid, they wouldn’t advertise the others on their site. I too often visited the IRD site before I found this site. I will not say anything negative about their site but I found this site to be more helpful and supportive for me and Addy so I chose to stay here.

Zegerid can (and did for Addy) take 10 days to work and then at the 15-18 day mark, I had to up her dosage (as I was warned about by another mom on this site) bc she leveled out on the dosage she was on. Once I upped the dosage, she was fine. Addy was always on a higher dose than even Marci-kids recommended on their calculator (until she was 13 1/2 months old). I was always in contact with Dr Phillips concerning this. We tried to cut her doses down 3 times since she was on them but it never worked until then (she started zegerid at 7 months).

I hope this helps you…its ALWAYS good to ask questions and figure out what works best for your child and your family….if you are not comfortable with a medication, it is ALWAYS best to educate yourself as much as possible on it to decide what works for your child. Please don’t apologize about posting this…this is what the site is for….to ask questions of other members and get their opinions and what they have learned. Good luck and I hope your dd is better soon!

[Anonymous]

We haven’t tried zegerid, but we did push for the marci-kids dosing for Kaelyn’s prevacid. There are some things that make me respect Dr. Phillips and feel fairly comfortable trusting his info:

1. He has personally worked to help several parents on this site even if their child wasn’t using zegerid or caracream or anything that he could possibly profit from.

2. He never tried to hide the fact that he was one of the developers of zegerid.

3. It honestly seems that he is working to try to benefit children suffering from reflux, and his research has focused on children. From what I’ve seen, he’s one of the only people doing this.

[Anonymous]

My dd did fine on the lower dose of Prevacid 7.5 mg 2x per day. Neither her pedi GI or pedi would prescribe Dr. Phillip’s dose even after I gave them all of the info from the site. Every baby is different some need the higher dose and some don’t. When Abby was doing bad even on the 15mg dose it turned out that it was the MSPI causing the problem and she was switched to Neocate formula. She did wonderfully on this and has been on the same dose of Prevacid since she was 6wks old.

I know that the biggest problem that people have with Dr. Phillips dosing recommendations is that he advises you what to dose your child when he hasn’t examined them. He told me to increase my daughter’s dose and not to tell her dr. Then if she was better I should say that I made a mistake and hopefully the dr would allow the higher dose. I felt very uncomfortable doing this and was very suprised that he would give me such medical advice w/out seeing my daughter. Even though you can’t OD on PPI medications they are still medications and can have possible side effects. It would be different if it was me taking the meds but it was my infant daugter. This is JMO.

Also we tried Zegerid and it didn’t work for Abby. She spit up much more. We goes wonderful on Prevacid solutabs.

Good luck!

Andrea

[Anonymous]

motherof3 wrote:

I know that the biggest problem that people have with Dr. Phillips dosing recommendations is that he advises you what to dose your child when he hasn’t examined them. Andrea

“examining” a child has no bearing on what PPI dose they should get. my son was not “examined” when our ped first prescribed zantac. she did it over the phone based on his symptoms. reflux is often diagnosed by symptoms alone.

i realize a lot of babies get testing done by Gi’s, but for many many babies, this isnt the case.

nataliachick72007-4-16 22:24:17

[Anonymous]

Thanks for this discussion. There really are no questions that shouldn’t be asked. I got a lot out of what everyone was discussing here. My dd doctor will often up a prescription or change meds without needing to see her. I find this helpful because rounding up all the kids and keeping them in order at the doctors office isnt’ the easiest. I must say that I also really respect doctor Phillips. He took the time to personally respond to my phone calls last week and ease any questions I had.

[Anonymous]

I just emailed MarciKids and got a nice reply back. Dr Phillips recommended Zegrid for Carson but our insurance company won’t cover it – says we should use generic Prevacid – which we are now. I see most of you are talking about Zegrid on this thread – does your ins cover it? Is it a tier 3? We are $10/$35/$50 Carson is spitting out the little beads from the Prevacid and I was wondering what to do (liquify it) or switch to another med. Dr Phillips says Zegrid would be his suggestion and he was a bit miffed when I said that our ins wouldn’t cover it. He asked for our insurance company’s name and exactly what the language said. I typed it out and emailed it to him. Not sure what will happen, if anything, now. Sorry if this should be in the insurance thread.

[Anonymous]

Thanks again ladies.

Christine– she’s been on the higher dose for about a week (or maybe it’s less? I can’t recall. I should write this stuff down!) and there is no major change. At the same time her reflux isn’t “that bad” in that she eats well, gains weight well and doesn’t cry 24/7. She’s become a tad easier in that I can now put her down in her bouncer (before I couldn’t put her down for a SEC). She still screams bloody murder in her carseat. Overall though this is now a baby I can live with 😉

I will talk to my ped. on Thursday to see what she says. I hope in the meantime she has read the marci-kids site like I’ve asked her to, but she seemed a bit “hey, I’m the expert here” in tone, KWIM?

I’m plowing through my box of zegerid now on the new dosing, just under 2 packs a day, so I will have to ask her to allow for more refills (so I will have to talk to her about it again and convince her to up the dose if I want to continue).

thanks again– i agree– this forum is the best!

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