Q about zegerid dosing./marci-kids

[Anonymous]

Christine: I know what you mean about writing it down. When Carson was just a few weeks old I bought a notebook and each page is one day. In the corner I write down his meds and scratch down whatever else I think may benefit me when/if I need to look back. Nothing professional AT ALL. But, when I go to the doc I take it with me and I think sometimes it helps me not go crazy! I can say – hey, when we did this – it helped or it didn’t. I keep it on my nightstand and scribble in it right before I go to bed each night. Just what works for me.

[Anonymous]

TnBEich wrote:

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.

we were doing zegerid for a while but our insurance wouldnt cover it. so dr phillips assistant at the time Joel suggested prevacid with caracream, so thats what we do now. caracream is the original zegerid.

[Anonymous]

Natalia: I complain (sometimes out loud and sometimes to myself!) about Carson and what he CANT eat but I see your little Trace can’t have milk/soy OR WHEAT! We were able to eat wheat about 6 months ago. I feel so bad for you – does Trace have a lot of rice products with fruits/veges? It must be hard to consume enough calories per day – thank goodness for Neocate. I do feel bad for you and Trace. People don’t know how hard it is until you have been there – I was so thankful that Carson could eat a noodle. I hope you get there very soon!

With the caracream, may I ask how much you pay for it? Do you order it directly through MarciKids? Did you just email them where it says “Contact us”? If I understand right, you dissolve the Prilosec in the caracream yourself and then are able to give him a liquid. Do you have to give it on an empty stomach and then wait a half hour like with Prilosec? This just may be what we need – then Carson woudn’t spit the little balls out. Little stinker.

[Anonymous]

Thanks for posing the question “mommy of violet”. I think it is really healthy to ask questions and make your own mind up. I have never been to the other site so might have a peak. I think we grow up thinking that medicine is an “exact science” but when you stumble into somthing like “reflux” it kind of doesn’t turn out to be so “eact”. Goodluck with whatever you decide to do.

[Anonymous]

TnBEich wrote:

Natalia: I complain (sometimes out loud and sometimes to myself!) about Carson and what he CANT eat but I see your little Trace can’t have milk/soy OR WHEAT! We were able to eat wheat about 6 months ago. I feel so bad for you – does Trace have a lot of rice products with fruits/veges? It must be hard to consume enough calories per day – thank goodness for Neocate. I do feel bad for you and Trace. People don’t know how hard it is until you have been there – I was so thankful that Carson could eat a noodle. I hope you get there very soon!

With the caracream, may I ask how much you pay for it? Do you order it directly through MarciKids? Did you just email them where it says “Contact us”? If I understand right, you dissolve the Prilosec in the caracream yourself and then are able to give him a liquid. Do you have to give it on an empty stomach and then wait a half hour like with Prilosec? This just may be what we need – then Carson woudn’t spit the little balls out. Little stinker.

yes we are now on a dairy/soy/wheat/gluten free diet. it is really tough…i am so new to the world of intolerances…

with the caracream you dont have to time with meals.you send marci-kids your rx info and they send you instructions for how to mix it up. they are 13.50 a kit, and we go through one kit a week. they also usually recommend to use prevacid over prilosec, bc supposedly the prilosec tasttes really nasty when its compounded. i will look for chads email addresss, you can take care of all of this through Chad.

ill be back and post it for you.

[Anonymous]

here is the email

hickscj@health.missouri.edu

[Anonymous]

Violettsmama,

If it’s only been a few days or a week, I think you will likely see some more improvement, but that’s great that she’s a baby you can live with now. (I know exactly what you mean by that. My refluxers were unbearable).

I agree with what some of the other moms said about Dr. Phillips. I haven’t spoken to him myself but I’ve read many posts here from people who say that he took their phone calls, answered their emails, and called their doctors to help them with their reflux babies. And it was not always Zegerid that these babies were on. Of course he suggests Zegerid but he will help you if your baby is on Prevacid and he’s even been telling moms that they can use Pepcid Complete, an OTC medication. So, he does seem to really care about reflux babies.

I hope Violett continues to improve!

ndrose2007-4-17 9:59:34

[Anonymous]

evergreenie wrote: Thanks for posing the question “mommy of violet”. I think it is really healthy to ask questions and make your own mind up. I have never been to the other site so might have a peak. I think we grow up thinking that medicine is an “exact science” but when you stumble into somthing like “reflux” it kind of doesn’t turn out to be so “eact”. Goodluck with whatever you decide to do.

My husband is very disgusted with this MSPI/reflux/nonsleep issue/vomiting issue and he says that doctors are doing precisely what they say: Doctors practice medicine.

[Anonymous]

Natalia: Thank you very much. I am on a mission today!!

[Anonymous]

Okay, I didn’t read all the replys just the ones on the first page and I don’t think anyone offended anyone. I’m a pretty soft hearted person too. My experience is this, with my first son he was on a very low dose of prevacid and never got help. With Justice I found this site and marci-kids. When i first got on here Justice was on pepcid and then prevacid. I e-mailed Dr. phillips and he recommend a higher prevacid dose and also the solutabs. My sons dr wouldn’t go for it so I asked dr. phillips to call her. I actually went with Zegerid because he was so nice to call my ped and also a friend of mind had tryed Zegerid and it was working for her son. Marci-kids helped us so much and it makes me sad that anyone would bash them. I even thought at first that Dr. Phillips would only recommend Zegerid,but he just wants to help. I now feel bad for thinking that about him. I think I just might visit that site. Moms and babies should not have to suffer because they don’t have all the info. By no means am I saying that the higher dose made everything better. Justice still didn’t sleep great, but at least he ate like a normal baby and was happy. Thank you for this post.

ForumAdmin2007-4-17 23:1:35

[Anonymous]

I too have nothing but positive things to say about Dr. Phillips and Marci-kids. Dr. P is a pharmacologist and even my doctor said that he would definitely know more about how medications work than a regular doctor would. He has always been so helpful to me and when Abby was at her worst just over a year ago, Joel (the former Chad) called me several times on the phone to give me advice and support. My only wish is that they would work on publishing all of the wonderful research they have done and let doctors across the nation in on what they have learned. Think of all the little babies that wouldn’t have to suffer through the “let’s start here with this dose and we can move up from there”. I really wonder what would happen to many of the babies who are still suffering if their doses had been correct from the start –

That’s just my two cents worth – I love this board and don’t know where I (and Abby) would have been without it

Robin

[Anonymous]

Starting with a smile. All I have to say is this. I have two children that have had reflux. My oldest was first put on zantac and after a week it totally flopped. He was then put on zantac and reglan also a flop. Then Prevacid pkts and then solutabs. He was never helped and suffered for 9 long months in pain. I am truely amazed that he and I are still alive. Sometimes it is not just a matter of dealing with a fussy baby. I almost lost my marriage, my sanity, and my life over it. With my second he started on pepcid and then the dr recommend dose of prevacid. Neither helped until we found this site and marci-kids. Oh, and it was many weeks if not a month before we got the correct dose. Once we put Justice on zegerid and the marci-kids dose he became a happy baby. Still didn’t sleep, but was happy and ate without screaming and arching. That to me is proof. I’m not saying every baby needs to be on a high dose and I don’t think the ladies here are saying that either. I think sometimes it is best to start with the highest recommend dose and then wean down. Then you know for sure what dose works best for your baby.

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