Welcome to Infantreflux.org!
You’ve found a great place to research & educate yourself so you can be the best advocate for your baby! I am a mom. I was a desperate mom. I found infantreflux.org in 2003, when my baby was a newborn, and I never left!
I can’t leave this place. My baby is now eleven (11!) years old and he’s WONDERFUL! He’s healthy, intelligent, athletic, active and emotionally and socially well-adjusted! [now 12!] [now 13!]
I wasn’t so sure, back in 2003, exactly what the future would hold for him! He was born, ‘on time,’ with a ‘normal’ vaginal delivery; it wasn’t ‘natural,’ in that I did have an epidural and a shot of something in my thigh, before the epidural. Immediately after birth, when he was taken to the nursery for observation, he had apnea episodes; he stopped breathing and turned blue. This put him in the NICU and he was sent home on an apnea monitor. Whoa, those things are LOUD! It turns out that apnea is the body’s way of protecting itself; he was refluxing and it went so high up that his body shut down to protect his lungs. He was born with reflux. He didn’t have much to eat, just some colostrum, before he was whisked away to the nursery, so I don’t believe he was refluxing ‘food.’ Why did he have reflux? Click here for possible causes.
My son shrieked and howled nonstop. NONSTOP; I’m really not exaggerating. It was a nightmare. He cried and I cried. My husband and I took turns holding him until we HAD to pass him off to the other one. My baby and I cried together and I talked to him, telling him all the things (meds, etc) that we were doing for him. The situation was pitiful! I hopped on the internet and found this site and I never left. I have a life, offline, too. I work full time outside of the house, I’m married and we have two boys. Our second son did NOT have reflux, so miracles do happen!
Why am I still here? Because, I’m sad to say, that not much has improved in the past
eleven thirteen (!) years. In fact, I do believe things have gotten worse. Please do not get discouraged! Don’t despair! You’ve found infantreflux.org! Research! Learn! Fight for your babies! This is what I continue to do. I cannot leave because I feel the need to help others learn what they can, so that things can CHANGE. It’ll happen! We’ve come a long way, don’t get me wrong! However, there is a (continued) need for parents to speak up and advocate for their babies.
This site, and forum, will help you and YOU can help OTHERS. This site wouldn’t be what it is without YOU! Please contribute! When I first started, I was a lurker. I didn’t want to post. I even private messaged a mom who answered me and encouraged me to post. So, please post! Your experiences will help others.I 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 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 (Archived) Marci Kids Site. 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: (1)TummyCare Max and (2) BellyBuffers. This company (Infant Acid Reflux Solutions) had nothing to do with the University of Missouri. At the time of infantreflux site re-launch, there were NO PRODUCTS! Parents learned to go rogue, with the help of Dr. Phillips himself, and learned how to make their own!! However, ‘the products’ were then brought back, again by IARS, and ‘they’ are in the process of manufacturing Tummy Care Max now.
I need to tell you that I TRUST the dosing guidelines that were researched extensively by 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! You know what? He’s
eleven thirteen (!) years old and wonderful! He’s healthy and smart and socially adjusted!!! He was on PROPER dosing of PPIs and he’s FINE! I THANK THE UNIVERSE FOR DR. PHILIPS AND HIS TEAM AT THE UNIVERSITY OF MISSOURI!!!!
Laura, a.k.a. “hellbennt”
Ps: I’m always pushing parents to find the Root Cause of their babies’ reflux. Here are some Possible Causes. In my baby’s case, root cause was from an immature Lower Esophageal Sphincter (LES). How did I figure that one out? Well, I was desperate and, while I didn’t think that my baby’s reflux had anything to do with a protein intolerance, I was so freaked out and needed to do SOMETHING, that I followed the Dr. Sears Total Elimination diet, the TED . This is for breastfeeding mothers, to make their milk as ‘simple’ as possible, free from offending proteins. From this diet, I was able to ascertain that diet did not have any affect on my baby’s reflux. Well, I did learn that some ‘odd’ things did affect him: eggplant, tomato/tomato products, citrus, and tuna. The usual suspects, cow’s milk protein, soy protein, eggs, nuts, wheat, corn, etc, did not affect him.