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June 18, 2013 at 11:00 pm #72355hellbenntKeymaster
Welcome ! You’ve found a great place to research & educate yourself so you can be the best advocate for your baby!
yay! you made it!
feel free to spread the word about joining the board- I don’t need to be bombarded by a lot of private messages, but of course I want my cake & eat it too, lol – so, if you ‘know’ anyone who wants access, encourage them to do so & you can be the ‘middle man’ – contact me – a pm here goes to my email that I’ll for sure see – the problem is that i’m not on fb 24/7, I’m just not-you can also send a pm to martha (you’ll ‘meet’ her, I’m sure – happymom) – she knows where to find me, lol!Ok, the place to start is here (it’s kinda a maze in here, whoooo, lol!):
The best place to start is Groupie Intro – this is stickied in the Introduce Yourself Forum – I have a LOT to say and most of it’s here (‘groupie intro.’)
It’s looOong but TRULY will help you-
read through it, refer back to it, scroll through it/skim through it.
You’ll find yourself coming back to it!
https://www.infantreflux.org/forum/forum_posts.asp?TID=853Please, go to the different forums, another example is the Medicine Forum (this is just an example! please surf around!)
and look for
‘stickied’ posts. This means a post that is ‘kept’ at the top of the forum, so when you go to the Medicines Forum and look at the top few posts, you will see there are important, ‘stickied’ posts at the top,for example: Read PREVACID 101 (I need to fix this- the info is there, but it looks like gobbelty gook- sorry!)
scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1(from there, look for a link there, look for underlined words “Marci Kids Dosing Chart’)
Read/skim through the stickied posts – they will help explain a LOT
ALSO: use the ACTIVE TOPICS button located in the upper right-hand corner of the screen. Choose different amounts of time, from the drop-down menu!
On to medicine:
PLEASe research all you can! don’t ‘just’ take my word on things! I DO know a lot, ha! but YOU’re the mama & I am not a medical professional, I’m just a mom who had a baby w/ severe GERD 10 yrs ago (!) and can’t stop helping others because unfortunatly not much seems to have changed over this long time so many drs are still so_____ (fill in the blank)…Mylanta Cherry Supreme was the one variety of mylanta that does not contain aluminum. you can’t find it anymore, but you can find store brand equivalents. Try rite-aid, cvs brand, walmart, target, Bartell Drug (West coast), Dollar General, brand names: Geri-Care & Geri-Lanta Supreme, meijer, etc- just look for one that does not list aluminum in the ingredients. you can give 1ml up to 5 times a day- it’s safe, even for newborns. if you see loose stools back off.
you can look online to find store brand equivalents.
here, I did a google search:
http://www.rxzone.us/product.cfm/rx/medicine/antacids–laxativesnbsp/genericantacids/Antacid-Liquid-Cherry-12-Oz-710723.htmlcvs brand: http://www.cvs.com/shop/product-detail/CVS-Antacid-Liquid-Supreme-Cherry?skuId=191659
And also
Zantac dosing- my/other’s question (has axid & pepcid doses, too):
https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1Calculate proper dosing & how best to administer the meds
Give the 2 meds (zantac and prevacid/prilosec/zegerid/nexium) 4hrs separate from one another
(you can give mylanta with zantac/axid/pepcid/tagament – you cannot give mylanta w/ prevacid/prilosec/zegerid/nexium))
Read looking for a ped GI (another sticky)
To find a recommended ped GI near you
Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660
there are recommendations for ped GIs in your area…PLEASE add your experiences, too! This is how others can gain from your knowledge – the good and the ‘bad’ opinions!The Search button is your friend! Use keywords & change the drop-down menu to 6 months & OLDER, using keywords
make sure you know the proper dose, too, to TELL your dr…
PPI Dosing Chart: https://www.infantreflux.org/forum/forum_posts.asp?TID=2668What’s all this about zegerid?
zegerid has the drug prilosec in it and it has buffers, so that it can be given w/ food. Otherwise, you must give a PPI on an empty stomach, followed by a ‘meal’ 30 minutes later. Examples of situations where you have to follow the ’30 minute rule:’ if you use prevacid solutabs or, if you use either prevacid or prilosec capsules (you would open them up and give the beads inside the capsule- you would give on an empty stomach and administer the beads w/ 1/2 tsp of applesauce & then you would follow w/ a ‘meal’ 30 minutes later).
why should you care about zegerid? because you can give the medicine at any time, even with food, and you don’t have to worry about timing it around an empty stomach.
are there other options?
yes, you can buy over the counter capsules and administer the beads inside the capsule.any other options?
you can try and TELL the pharmacist EXACTLY how to compound (make into a liquid) your prevacid or prilosec. However, for whatever reasons, it can be difficult to get a high enough dose prescribed and, for whatever reasons, pharmacist insist they’re doing it correctly their way and they don’t take kindly to compounding the way you or your doctor tells them to.zegerid mixing:
Mixing instructions Zegerid OTC without Caracream
https://www.infantreflux.org/forum/forum_posts.asp?TID=14637using zegerid rx packets:
https://www.infantreflux.org/forum/forum_posts.asp?TID=14587&PN=1So glad you found us!
~laura < br />
ps: I have so many more links! again, look at the stickies and the active topics
hellbennt 2013-11-12 23:19:15 June 22, 2013 at 5:54 pm #72439hellbenntKeymasterWelcome!
My suggestions to navigate this site:
Use the Active Topics button, located in the upper right-hand corner of the screen
Go back varying amounts of time & read posts.
I’m posting from a tablet now, & my links are on my desktop (& it feels redundant for me to post the same links, as you’ll find them/come across them, as you surf/explore the site/board/forum)…
Read through the
main forums & look for the sticky topics (they have a picture of a push-pin next to them; they’re ‘stuck’ at the top of the list (of topics)
In the Introduce Yourself forum, look for the sticky Groupie Intro
Use the Search button, using keywords, & going back 6 months & older, from the drop-down menu
If this doesn’t work, try one year & older(,etc)
Please post w/ any questions and also with what works for you, to help others
So glad you made it!
Laura]hellbennt2013-06-24 17:27:44
July 31, 2013 at 7:27 pm #72515hellbenntKeymasterI would be remiss if I didn’t mention Marci Kids. You’ll no doubt come across this terminology, as you navigate through the forum. The place to start, for ME anyway, is back in 2003, when I found this forum:
I started to read and figured out a LOT on my own! I learned from others what meds, doses of meds and FORMS of meds that their little ones (los) were on. I learned that there was this phenomena where everyone was figuring out that their compounded Proton Pump Inhibitors (PPIs) were not effective. These are PARENTs who figured it out! PARENTS were figuring out that their compounds would last a week or maybe two. Anyway: the point is that it’s PARENTS who figured things out. And it’s PARENTS who are continuing to figure things out.
So: back to the compounds (this is making a liquid form of medicine). At the time I found and joined this board, there was a team of PharmDs (doctors in Pharmaceuticals; not medical doctors, but research PhD level doctors) at the University of Missouri. It was Dr. Phillips’ Research & Development Department; Dr. Phillips put together the team of researchers and they all worked for the University of Missouri. In the early 2000’s, the University of Missouri was making, and selling, two products to make PPIs stable and easy to give to babies. The names of these products were: Chocobase and Caracream. In the early 2000’s, FlavorX (you may see the signs today at Walgreens and/or other pharmacies) even used these products AT THE PHARMACY to compound, and flavor, PPIs for infants. We ordered caracream, brought research to our ped GI and, at long last, our son was good to go!I don’t know the politics; all I know is that eventually Caracream (& Chocobase) were no longer sold by the University. Those, like me, who had been purchasing it were ‘ok’ though, because they put our babies in a study and therefore we could continue to get the caracream through the study. New patients were also able to be added to the study and they could also purchase the products, up until 2011.Marci Kids (Midwest Acid reflux Children’s Institute) was formed at the very beginning, in the late 1990’s. Dr. Phillips was always involved and he was the one that instructed his team to create the website. Buffer Babies was created, in addition to Caracream and Chocobase, to supply infants that had issues with sodium bicarbonate. Buffer Babies was an additional item sold by University of Missouri and was also invented by Dr. Phillips.
Ok, so here’s the Marci Kids Site:
http://web.archive.org/web/20110427014830/http://marci-kids.com/
All PPI’s, including Zegerid, were mentioned on the Marci-kids site to provide all information available, to the parents of babies with acid reflux/GERD.
Bufferbabies, Caracream and Chocobase were sold through a different site (also owned by the University of Missouri) called Refluxsolutions.com
ZEGERID? Yes!
This new (at the time) drug came from the University of Missouri; Dr. Philips invented Zegerid. It was sold (the patent was sold) to a pharmaceutical company called Santarus & it (Zegerid) continues to be sold to this day. The University really didn’t (doesn’t) want to be in the marketing, production & distribution of medicine, buffering agents – you get the idea. I’m not going into zegerid here; there’s plenty about it here, on the site.
After the University of Missouri closed down the study that sold BufferBabies, Caracream and Chocobase, Infant Acid Reflux Solutions created two products:
TummyCare Max and BellyBuffers. This company (Infant Acid Reflux Solutions) had nothing to do with the University of Missouri.
Currently: there ARE NO PRODUCTS!
Parents are going rogue and making their own!!
HOWEVER, ‘the products’ ARE being brought back (!!) and ‘they’ are in the process of manufacturing quantities now. Although there is no distribution date yet, I am told that I will be notified when they will be available again. (!!)
I need to tell you that I TRUST the dosing guidelines posted by Marci Kids (and Dr. Philips & his team at the University of Missouri).
My son had SEVERE GERD. SEVERE enough that he had apnea episodes (he was on a monitor) and Sandifer’s Syndrome (a neurological reaction that babies w/ reflux can display due to the severe PAIN they are in). He shrieked/howled one day/night and HE LOST HIS VOICE. It’s very difficult to know how pitiful that is!
And, you know what?
He’s ten (!) years old and wonderful! He’s healthy and smart and socially adjusted!!! He was on Marci Kids dosing of PPIs and he’s FINE!
I THANK THE UNIVERSE FOR DR. PHILIPS AND HIS TEAM AT THE UNIVERSITY OF MISSOURI!!!!September 1, 2013 at 12:36 pm #72603hellbenntKeymasterbump
November 28, 2013 at 5:06 pm #72658hellbenntKeymasterwhat else can I tell you? let me know what links will be helpful – this is a fabulous data base!
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