Zegerid-Question for Erin

[Anonymous]

Hi, I am a newbie to this site and so thankful that I found it!! I have a 9weeker with stage 4 reflux! We have tryed Zantac, Prevacid and Prilosec, (all suspension forms) none of which have worked. Last evening I stumbled across Erin’s posting asking for everyone to send in success stories about Zegerid. I met with my Ped this morning and brought all of your stories as well as all the info Dr. Phillips sent to me. Thankfully my Ped called it in to the Pharm and I will be picking it up tomorrow. I am praying that this is the gold at the end of my rainbow………

I am curious to know if you got your prescription Erin? IF so, is working for Hannah?

[Anonymous]

Hello! Welcome! I am one that added my story to her post. I am so glad you had success with her ped, not many will do that. Congrats. My daughter is on Alimentum and Zegerid and it was the best combination for us. I hope it works for Evan!!!

[Anonymous]

HI jenay

I’ve noticed that your evan was on zantac but it did not work.My question is does the mylanta work better?and what kind of mylanta r u giving him?cuz my jewelee is on zantac and it is not working at all niether is the reglan.

I wish you lots of luck and hope that zegrid works for him.

[Anonymous]

Thank you!!! It’s amazing how much I have learned from all of you in such a short time!

[Anonymous]

Hi Frances- He is on the Cherry Supreme & he loves the taste! You can give 3ML 4x daily. We only use it when he has “reflux flares” and it seems to help him through. Dr. Phillips actually recommended giving his dose of Zegerid mixed with Mylanta.

[Anonymous]

Horray for you !!! I also had posted my success story with Zegerid on that post. Alimentum thickened with rice cereal and Zegerid has been our magic potion. Hope it works well for you also!!!!!

Robin

[Anonymous]

Hooray!!! Good for you for going to the doctor so well prepared and ready to advocate for your baby. Please keep us posted!

[Anonymous]

Robin- I noticed that your daughter is on 4.5mls 3x daily. How much does she weigh?? My son is 13lbs should he be receiving more than 2.5mls 3x daily?

[Anonymous]

Robin- My mistake, I just realized that you are using 20mg packets and we were prescribed 40mg packets, thus 2.5mls 3x daily. I will get this yet!

[Anonymous]

Yikes! Jenay, if you are using the 40 mg strength packets and mixing it according to the instructions on MARCI-Kids, then you should be giving a minimum of 7 mL (14 mg) per dose in order to provide enough buffer in each dose to protect the drug from degradation in the stomach acid. If you use the 20 mg packets (which contain proportionally twice as much buffer) then you should give a minimum of 3.5 mL (7 mg) per dose.

The amount that you are giving with that strength of Zegerid is much too little per dose. You should check the information on the MARCI-Kids website to make sure that you are doing it right.

If you have any questions for me, feel free to email: andrewsjj@health.missouri.edu

[Anonymous]

Jenay and everyone,

Hi! Finaly got back to my computer. We had a disruption in cable service

here.

Yes, the ped did give us a script for Zegerid. I had printed out all the

MARCI-

kids info and organized it into a presentaion/portfolio. He was a bit

relunctant, but conceeded when I showed him the specific section on

Zegerid from the website.

However, he did refuse to perscribe it at the dose recomended by MARCI-

kids. I was a bit , but having won the battle of just getting

the meds, I relented and am taking care of it myself.

But…..there is a BIG problem.

Hannah cannot (at all) tolerate the taste. Just a drop in her mouth and

she is gagging, retching and throwing it all up. It is VERY VERY

sweet. I’m so upset becuase she didn’t even do this with the Zantac and

that stuff is HORRIBLE tasting to me.

I’ve tried diluting it further, but that doesn’t affect the taste at all, and just

makes more to get down. I’ve tried mixing it with something bitter like

thinned plain yogurt…no go…just thicker vomit. I tried mixing it with

sugar, brown sugar, maple syrup and honey (the doc okayed the honey as

long as I got it fresh- and there is a honey farm a block a way from my

house) to try to give it a real sugar taste instead of the sucralose taste of

the Zegerid. All to no avail. I’ve been sobbing the past few days…trying

to do anything. Her pain is so pronounced in the evenings…she screams

inconsolably for hours until she falls asleep. I give her the zantac

sometimes if there has been enough time passed since our last attempt at

the Zegerid.

Joel, does this seem like a situation in which it would be deemed

appropriate for me to get Caracream? And can anyone describe to me

what caracream tastes like (how sweet, flavor, etc) so that I don’t spend $

$$ on it only to have her throw it up, like I have with the Zegerid?

So that’s the scoop. The doc actually called me to thank me for all the

info I gave him. Thank you so much, everyone, for your stories and

support!!!!!!!!!!

[Anonymous]

Oh you poor thing! I totally understand the terrible evenings, I too have been sobbing right with Evan! Joel just posted instructions on how to mix with cherry mylanta for your problem excatly. Call him, he is so helpful! My son Evan loves cherry Mylanta, that is what we give him in the evenings to get him through his flares. It works very well for us and usually puts him to sleep.

I think MARCI-Kids is wonderful and my Dr. was amazed at all of the research I provided him with. I even educated the Pharmacist and Walgreens today. (He was quite impressed with me and I have to give all of you the credit! )

We are giving our first does today, wish us luck!

Good Luck to you Erin, I hope Joel can help you

Jenay

[Anonymous]

Jenay,

Good luck to you. My advice is to go slow, because once he throws it up

once…well we all know how hard it is to taste something once we’ve thrown

it up. I think that’s what is happening now with Hannah.

I’m going to pick up some mylanta, but slomething tells mr she won’t like

that either. I’m still interested to know what caracream tastes like.

[Anonymous]

Thanks! I think we will mix the combined Mylanta/Zegerid dose with an once of formula first to see how it goes.

Take Care!

[Anonymous]

Erin, you should be able to get CaraCream Jr EZ Mix kits from your pharmacy. They can order it from a flavoring company called FlavoRx. I would try a pharmacy other than Walgreens, since they seem to have trouble getting it. We can distribute it through FlavoRx because we have a little study set up with them, which makes it “for research purposes”.

Ask specifically for the CaraCream Jr EZ-Mix kits and make sure that they have the most recent instructions for them – as they have changed recently. Email me if you go this route and I will send you the mixing instructions to take to them. If, for some reason, you cannot get CaraCream through a pharmacy, email me and we will figure something out.

andrewsjj@missouri.edu

[Author]

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