Home › Forums › Infant Reflux Information › Medicines › Update from us- NO GO on Zegerid
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April 5, 2006 at 10:02 pm #5463
Anonymous
InactiveHi- we used zegerid (and fought SO had to get it- it’s not formulary for many and was quite expensive) for 2 months- Our baby (now 5.5 months) did not warm up to it- and the amount needed to dose her was a lot lot (relatively) so we condensed it- less water to make it only 2ml per dose to make it less painful to feed her (we tried every trick). I contacted Dr. Phillips who contradicted the marci-kids website by NOW telling me that for a baby less than 6 months that we had to have the dose *4* times a day. I asked him how was I supposed to convince my daugter’s GI to does that when HIS own chart only said 3 times a day (that chart list how to dose per weight three times a day).. he was basically increasing our baby’s dosage 33%- we had to get our monthly prescription changed to do this. I got no response.. before this I got a few responses until I asked this.
So- given no PUBLISHED explanation of dosing- we continued using zegerid per the published (and more accepted methodology by GI’s) chart and marci-kids. We go to the best pediatrics GI practice in a MAJOR metro area.
Two months later, and we knew this pretty early on- reflux is bad- not better.. now she spits up (used to be a silent refluxer).. part of this could be she’s more active but the conclusion is the medicine is not working. We could not get in to see GI dr til 2 months later (yesterday) and discover that our daughter went from 50% weight since she was born now to 25% weight- so NOT happy. Now we are talking about scoping.
I know everyone is different- but I can only tell you I came here hoping to find answers and help. There is a huge push here from people who WORK for the company that manufactures zegerid (JOEL, DR PHILLIPS) – and make it sound like it’s THE solution. And maybe it works for some- like other medications, it can be hit or miss (ie allergy). I want to say that the messages here were def. pointed to that zegerid was the only and best solution.
Talk to your doctor- actually even do a search on zegerid as I did after going through hoops with GI and insurance. You may find their own reps complaining about it. Again, it’s hit or miss- but it IS NOT THE SOLUTION as it’s pushed on in this infant reflux forum. There is another forum for reflux as well where zegerid obviously is not monitored by pharmaceutical reps/employees.
best wishes to everyone,
April 6, 2006 at 8:23 am #5473InactiveI’m sorry that your little one is having a hard time and that the Zegerid did not work. However, I really do feel the need to defend Joel and Marci-kids as well as the people on this forum. I truly believe that you have it wrong when you say that Marci-kids is pushing Zegerid for the company that makes it. In my personal experience Joel has been a saint who has helped so many of us beyond the call of duty, trying to help our babies to feel better. I also don’t think that anyone on this board ever suggested that zegerid was the only solution. But for people who have had it work for their refluxers it’s been a godsend. I think like anything else in life, these message boards included, you have to take the information you get and decide for yourself what’s right and wrong for your child. I truly hope that your little one gets some relief soon.
April 6, 2006 at 9:04 am #5474InactiveI too feel I must defend Joel and Marci-kids. Even they will tell you that one drug may work for one baby but not another. Some babies do fine on prilosec but do horrible on prevacid and visa vers. We just happen to be the lucky ones who love Zegerid and found it when Colt was tiny and couldn’t be on a schedule of when to eat and when not to eat. Zegerid gave us the peace of mind knowing that he was a least getting the meds he needed. Colt has been on a high dose of 40 mg. a day or 10ml 2 times a day. We are finally going down and he is taking 7ml 2 times a day. Every baby is different and they all seem to react to meds differently. Check out the differences when it comes to formula. Some do horribly on Nutramigen and great on Alimentum. Who knows why? Joel will tell you that if you can get Zegerid and it works then it will be an easy alternative to other forms. He will also tell you that if you can get your pharmacy to compound other meds properly that it will work also. I really think its more the pharmacies that don’t compound things properly and thats why they recommend the Zegerid.
April 6, 2006 at 9:35 am #5477InactiveI’ve been on this board for quite some time and never used Zegerid. Not everyone here decides to use it. Prevacid Solutabs worked great for us and that’s what I recommend for people to use. All of that being said, no medicine is a quick fix for reflux. It will help ease some of the pain but in most cases our babies continue to have problems even after they are on a proper dose of the medication. The range most see some kind of improvement is about age 12-18 months. Some a little sooner, some a little later.
I agree with what Lori said – you have to take the information that you find in forums like these (and everywhere else on the internet for that matter) and decide if it’s right for you and your family. Good luck.
debit342006-4-6 9:43:32
April 6, 2006 at 12:34 pm #5512InactiveLaura,
I’m sorry to hear that your daughter’s reflux has gotten worse and that it has
not been helped by Zegerid. I must, however, make a few remarks in defense of
myself and the rest of the MARCI-Kids team.1) Zegerid is made by a company in San
Diego called Santarus Inc. All of us on the MARCI-Kids
team work for the University
of Missouri Healthcare System,
NOT for Santarus. I have no vested interest in seeing this drug or company do
well. I simply believe that it is the best option out there for most infants
suffering from GERD. I happen to know a lot about how it works because it was
created here by Dr Phillips and others on the team.What is more, pediatric use of PPIs
constitutes such a small portion of the overall PPI market that if I did work
for Santarus, it simply would not make sense to waste my time on trying to get
a few families on a messageboard to switch to Zegerid.It is not even part of my job
description to monitor and post messages on this messageboard, and I only do so
when I have the time, because I believe that I have a lot of helpful
information to offer to families that are going though this ordeal.2) Moms here can vouch for the fact that I do not think that Zegerid is the
only and best solution for every baby. For a variety of reasons, some
babies respond better to one form of medication better than to others.It is clear
from the published research that is available that PPIs are the most effective
drugs for treating GERD, but the form that these drugs come in is usually what
poses the biggest problem when trying to give them to infants and small
children. Zegerid has the advantage of being the only reliably stable true
liquid PPI suspension. The fact that it is a true liquid along with the fact
that it can be given without regard to mealtime make it a good fit for most
(not all) babies.One thing that
I do NOT like about Zegerid is the taste. I think it tastes pretty aweful, and
I’m not surprised that some babies won’t take it for that reason. However, some
babies don’t mind or actually love the taste (they’re going to have some taste
issues when they grow up!).As I have said before, Zegerid was
created by Dr Phillips after he first created CaraCream and ChocoBase here
(which taste much better to most babies). My main job here is making and
providing these two products to families that are either outside the US or are
participating in research with the University. When the University
of Missouri sold the rights to make
Zegerid to Santarus, we were forced to stop selling ChocoBase and CaraCream
commercially within the US
because of a non-compete agreement which was part of the deal. I wish that this
was not the case, because I think that these products are a better fit for some
babies than Zegerid, since they can be used with any PPI and they taste better.
But again, the other moms here can tell you that I have not tried to market
ChocoBase or CaraCream here, even when they were available to the general
public.The only other form of PPI that
seems to work pretty well for a lot of babies without bringing in a bunch of
other problems is the Prevacid Solutab, and I often recommend its use for babies
that either don’t respond well to Zegerid or who don’t have access to it. The
next best thing to this, in order of ease of use and effectiveness would be the
capsules of either Prevacid or Prilosec opened up and sprinkled on applesauce.
I have addressed the issues with both of these forms of PPIs elsewhere, so I
won’t go into that here.3)I cannot speak for Dr
Phillips’ dosing recommendations for your child. But I do know that dosing
these medications is a very child-specific type of thing and it is not
surprising to me that he would recommend a QID dose for her, since babies have
such a high metabolism and elimination rate in comparison with adults. I am
sure that Dr Phillips felt that this increase would be safe, due to the fact
that PPIs do not affect any part of the body other than the acid producing
parietal cells, so there is no worry about side-effects, even at very high doses.
This is information that most doctors are not aware of. Also, the dosing charts that are on our website are a starting place for dosing PPIs, not a maximum dosage. This clearly stated on the website. Some children do fine on lower doses than these, while others need much higher doses.In regard to him not responding to
your questions, you should know that he is extremely busy and very frequently
away from the office for long periods of time. It often takes him a couple of
weeks before he will respond to my emails, and I work for him!I want you to know that I completely understand your
frustration with your current situation and can see why you would see things
the way you have stated. I hope that I have been able to make the situation a
little more clear for you as well. I wish the very best for you, your family
and your baby, and I hope that if there is anything else that I can do to help
you, you will not be afraid to ask.Best regards,
RefluxSol2006-4-6 14:20:35
April 6, 2006 at 5:08 pm #5545hellbennt
Keymasterall I have to say is that we LOVEd caracream here and I always state that it worked wonders for Jonah and, that while I haven’t ever tried zegerdid, I would recommend it because it’s made by the same ‘people’/company, although it is however made w/ the drug that’s prilosec…jonah wound up switching from prilosec to prevacid, and caracream could be used with both, so for newcomers who cannot get caracream and cannot get zegerid, or for whom zegerid didn’t work for whatever reason, then I’d recommend getting the PPI compounded…joel has gone above & beyond describing for us (i’ve made a link) HOW to ask for compounds to be compounded correctly. I know from being on this board (again, another link I’ve provided) that pharmacists do NOT always know how to compound PPIs correctly and THIS info is not from joel at all, but from posts by posters here, on this very forum, who ‘figured it out’ for themselves through posting their findings/stories here on this board- these posts were from almost 3yrs ago I’d guess- this was way before joel ever joined in here to help with all PPI information, not just zegerid…
April 6, 2006 at 7:48 pm #5564InactiveHi Joel,
I apologize for saying you worked for the company- I knew there was some association – I saw links through the caracream part and thought it was now part of the santarus company (the website says we are part of santarus or something like that).
My post did emphasize that – like other drugs – zegerid does not work for all and that is something I could accept. What I guess made me look back was primarily Dr Philip’s response to me. On the marci-kids website there is a straightforward chart with doseing based on age and weight (3 times a day). My daughter;s GI was familiar with your study (and to be honest called zegerid a marketing gimmick- hence, you can see it took me a long persuasion with him and the insurance company to get the script approved). I wanted to make sure I interpreted that chart correctly (as you may recall, it lacked some wording that opened it to misinterpretation- you told me you would ask the web person to fix it). So my question was simple, my daughter is x age and weight, can you please tell me what does she should be on? His response was to add another dose- same quantity as described in chart (rather now 4 times a day). If babies less than 6 months should have more for reasons you stated, why doesn’t the chart state that? It felt like a moving target of advice/research.
I can read that people appreciate what you say and your advise as I had. However, when you are the only representative from one university study- you are basically the only “non dr” expert here and if you say as you just did that zegerid is good for MOST kids then- that’s pretty strong statement. It’s like a dr saying it. well, it basically is a dr saying it since it’s dr philips.
Anyway, I have apologized for my mistake in who you work for- but all my other statements still hold true. I was only sharing my experience/opinion- just as other people do.
I appreciate the offer to continue to post and ask- at this point, we are in hands of a top GI (we switched from the one who called zegerid a marketing gimmick) and we will let her guide us through the hopefully , please, short time until her system matures and she outgrows this.
Best wishes for everyone’s babies/kids to outgrow reflux and grow healthy.
Laura
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