frustrated on Zantac

[Anonymous]

Hi there, we just upped our dose to the 7-8 mg/kilo range and are on night 4 with no change. How long should I wait until I try maxing out the dose to 10mg/ kilo??

I’m trying to be patient, but it’s soo hard to watch dd scream so much.

I’m tired.

[Anonymous]

I would do it now.

[Anonymous]

is it better to have the dose evenly distributed throughout the day?

Right now she does 1ml/ .5ml/ 1.5ml (nighttime is the worst)

does it matter?

I’d be upping it to 4ml/day and was thinking 1/1/2….but I’m tired and frustrated that my confidence in my own decision making skills are shot…I really need some direction on what has worked well for other people.

thanks so much.

[hellbennt]

since night is the worst, I’d do

what you thought to do (1/1/2)

I would also now consider a PPI…many many have found (myself included!) that babies seem to plateau on zantac and then really need something ‘more’

I did NOT want to move beyond zantac. I found this board & didn’t even want to post, I sent a PM to another member. the rest is history, LOL!

[Anonymous]

thanks so much! I have a Ped appt this week to talk about the PPI and a GI appt the week after.

Just out of curiosity, did your transition to PPI go smoothly? I read about all the problems with compounding incorrectly, traces of lactose, low doses and I get scared that I’m entering into a whole different can of worms….

[Anonymous]

amandasmommy1 wrote: thanks so much! I have a Ped appt this week to talk about the PPI and a GI appt the week after.

Just out of curiosity, did your transition to PPI go smoothly? I read about all the problems with compounding incorrectly, traces of lactose, low doses and I get scared that I’m entering into a whole different can of worms….

You can ask for Prevacaid solutabs and then you don’t have to worry about compounding issues.

Jedd takes Prilosec compounded but that is because ALL his meds must be in liqud form they go in him via his gastric feeding tube….:(

BTW IF you get them compunded at a VERY good pharmacy you won’t have issues, We don’t. We get the compound from our local childrens hosp. they do a FANTASTIC job!!!!!

[hellbennt]

CARACREAM!!! look for the purple post for explanation:

Caracream: https://www.infantreflux.org/forum/forum_posts.asp?TID=11191&PID=94236#94236

[Anonymous]

You may very well have to work out some quirks initially when trying to switch to a PPI but the end result will be WORTH IT! If you are not seeing complete relief on zantac, don’t hesitate to try a PPI. You AND your DD deserve some happiness and relief!

As some of the others said, I would avoid compounded forms of prevacid (b/c you risk it NOT being made correctly!) The solutabs do contain some lactose which some babies have trouble with, but not all. And yes you do need a high enough dose or it won’t do any good…you’ll be back in the same boat you started from!

Feel out your doctor on the issue of PPIs and explain how important a good high dose is. GOOD LUCK! We’re here to help you through this!

[Anonymous]

Thank you so much for your encouragement…it really means alot! Right now I feel so alone in this decision making process. My husband just really follows my lead on this one. He thinks it’s “not that bad”….to him maybe. I end up crying every night and wanting to crawl under the bed when I hear her scream.

I maxed out her dose of Zantac yesterday and am going to see her Ped this week and push for something to get started with before we see the GI.

Thanks again for your support and guidance. It’s a real blessing to have found this group.

[hellbennt]

FAX FAX FAX the dr

dont wait for a call…

start off w/ a THANK YOU

keep it short & sweet

stick to the facts (no feelings and no rambling emotions)

state current meds, doses, symptoms

make request- flat out- short & sweet

THANK AGAIN

follow up by calling office to say fax was sent

call again later to discuss requests in fax, ie: have you called in the increased/changed prescription yet? THANK YOU

sample fax: https://www.infantreflux.org/forum/forum_posts.asp?TID=10633&PID=90325#90325

[Anonymous]

YEP pester them.

Like our GI nurse told me once when I finally stopped yelling to apologize to her ( hated my old GI) Anyway, she told me DO NOT APOLOGIZE it is YOUR job to get upset and get you point across. You are your child’s only advocate…!!!!!!

THE BEST advice I was ever given!!!!!

I would NOT do compounded privaciad…..!!!!!! That suspension is not good but for MAYBE 2 weeks. That’s why we went with the Prilosec.

FWIW I don’t think an insurance co will pay for acompounded suspension of a medication unless you have a feedign tube for the child. Most of them will MAKE you get a liqud like zantac or a solutab like Prevacaid.

We have to ARGUE witht eh insurance EVERY month, well the pharmacy does it for us..THANKS HEAVENS in order to get Jedd’s prilosedc filled. 🙁

Caracream can work but I would be careful with it. Esp. if you are splitting pills yourself. It’s not always the best to be splitting RX pills on your own…if you do too much NOT good, too little and not enough, you get the idea.

I would really try the Prevacaid first, it should work.

[Anonymous]

Just a few things…

-I TOTALLY agree… you have to be your child’s advocate!!! It’s the reason my 1st ds got early intervention services @ 12mths old & the reason we are on the path we are w/ Evan.

-I’m not a fan of compounded prevacid BUT our insurance did pay for it once we found a compounding pharmacy that billed our insurance (some don’t).

-You use the CaraCream w/ Prevacid capsule… no pills to split. Super easy.

[hellbennt]

caracream was the BEST for our son!

but you have to do what you feel is best for YOUR baby!

read read read & ask questions!

hang in there!

you are the only voice your baby has right now!

[Anonymous]

oh boy….this is very overwhelming! Thanks again for all the information! I have faxed the Ped and made my request to switch to a PPI TODAY. I called this a.m. and respectfully asked the nurse to let Ped know I needed a call back today about our issues. (DD was up 3 x last night – Thank God for my Wrap. I wore that baby and walked my neighborhood at 4am)

I’m still very confused about Prilosec, Prevacid and Zegerid… I was leaning toward the liquid Prilosec or Prevacid (I’m still not clear on the difference?). I have a friend who is a pharmacist, so I am hoping to chat with her today about compounding the liquid correctly.

but..now I’m wondering about the insurance and cost of meds. I’ve read on some posts about insurance only paying for one med and not another….do I need to call them before Ped call in a Rx??

[hellbennt]

yay for babywearing! you should have seen ME walking around the neighborhood at all hours, LOL!

as for the compound: I would contact marci-kids and ask about caracream/buffer babies being covered. ALSO: if a pharmacy can purchase it for you, then perhaps it would be covered THAT way? something to ask marci-kids & your friend…

as for the difference b/t prilosec and prevacid it’s like the difference between Motrin and Advil- basically the same, but some do better w/ one over the other. my son started out on prilosec but eventually needed something ‘more’ so he was switched to prevacid. others have done well with nexium and also protonix.

another thought: maybe insurance covers the prescription for compounding if the dr writes it out EXACTLY how it has to be made? It seems that most of the issues w/ insurance have to do with the compounding somehow.

All the way around, I’d say caracream is your best bet. You can use it w/ prilosec or prevacid (and maybe even w/ nexium and protonix- you’d have to ask marci-kids)

PLEASE REALIZE to keep baby on zantac for TWO WEEKS (given 4 hrs seperate from the ppi)! I learned this the HARD WAY

hellbennt2008-07-14 13:48:01

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