January 2018: To Research and form a Plan to Share with your Doctor:
Most doctors start a baby off on a H2 Blocker. This is a med like zantac, axid and pepcid. Most babies seem to ‘pleateau’ on this kind of med.
Ranitidine usually works at first but infants rapidly develop “tolerance” to the effect of ranitidine (Zantac) as well as the other H2 blockers (such as Pepcid, Axid). You cannot overcome the “tolerance” by increasing the dose. You need a PPI – but just to prepare you – many physicians are completely unaware of the “real world” dosing requirements for infants. At 11 lbs, 4 months, a dose of 8 mg per dose, three doses per day is what will control the acid reflux. It is likely that the physician will prescribe something like 5 mg per day. Renowned PharmD, Dr. Jefrey Phillips
Then they seem to ‘move on’ to a PPI. At this point, the time of starting a PPI, the damage has left it’s mark and the PPI can take up to 14 days to ‘show’ it’s full healing affect. If caught early enough, a PPI *can* help in as short a time as 48 hrs. Sadly, this is NOT the case w/ most of our reflux babies, because doctors want to start w/ H2 Blockers. Now, some babies absolutely respond to H2 Blockers and that’s that. You’ll find that the majority of babies here do NOT ‘only’ need H2 Blockers, because these cases are more severe, more intense, more complicated and desperate mothers (& some fathers) have therefore ‘found’ us & groups like this one. So, when starting a PPI, your baby needs to remain w/ the H2 blocker because, until you see that the PPI is ‘working’ then it’s as if your baby isn’t medicated at ALL. You must space the two kinds of meds 4 hrs from one another. The next obstacle is proper dosing of the PPI. Then, after that obstacle is overcome, the next one is what form of PPI and how to administer the PPI correctly (all the while sharing w/ your doctors).
If your baby is displaying ‘odd’ posturing such as extreme arching, twisting and what looks like possible seizures, it might just be Sandifer’s Syndrome. Use these symptoms as a measure to know the medicines are working. Don’t forget to rule out Lip/Tongue Ties! You may even need them revised & your revisions revised! Bottle/breast refusal, choking while eating, only eating while sleepy, difficulty sleeping & reflux/gassiness are symptoms of the tie. It is such a minor procedure with a hugely positive impact. Tongue ties are a midline defect- they aren’t supposed to be there. So any type of restriction is going to affect the body negatively. Everything just might be because of the ties. The revision can be life changing! You may have a completely different baby after!
for Mamas who have Successfully Gotten what they NEED for their Babies in Terms of Proper Dosing, etc!!!
This means from their Medical Care Providers & those who have gone Rogue! Tell ALL!
“Just wanted to say “THANK YOU! THANK YOU!” to Laura [infantreflux], Dr P [Dr. Jeffrey Phillips], and to the Moms in this group! Our journey is not complete….in fact it has just begun. We are still tweaking things and we are still learning and asking lots of questions, but our baby girl, Savannah [photo above], has made a tremendous amount of progress over the last month! JAN 1 she weighed 7.5 lbs (7lbs 4 oz at birth 12/7) and could hardly eat or sleep. We were in crisis mode, barely treading water! She screamed for 10 hours straight on several occasions. Due to all of the help with marci dosing and great advice from this support group, Savannah now weighs 10 lbs and she has started sleeping ALL NIGHT! She still has flares and she still has some days that are fussier than others but we are SO grateful to have made this much progress. We can now enjoy these precious newborn days with her. New Moms that are waiting to hear their Doctor prescribe Marci [higher] dosing, sadly this probably won’t happen. I encourage you to read, research, and reach out to other Moms in this group. Much love and gratitude to all the veteran gerdling Moms that have continued to offer their support!” Tiffany [& Matt!] E., Facebook
The infantreflux website and FB page were a tremendous help in giving me information about proper dosing and possible causes of reflux. However, I knew going into the next appointment that my GI doc was probably going to think I was crazy if I showed him some archived MARCI kids website. I know doctors only consider peer reviewed journal articles to have merit. So, I went on pubmed and researched peer reviewed articles related to PPI’s and infant dosing. I then summarized the key points from each article on a word document to support adult or increased dosing and printed each article. I take my LO to the GI appts alone and depending on her mood, I often cannot remember anything and my brain turns to mush. Writing down what I wanted to say helped present my points clearly. My GI doc is not the best in terms of being proactive and looking at root causes (yes, I wrote a review for him already), so he was not willing to prescribe a higher dose. I think he was more worried about liability than anything else… I told him however that I was home compounding already and he was actually okay with it. He reviewed the compounding to make sure the calculations were correct and he reviewed some side effects of higher dose PPI’s (increased gas, fussiness, decreased appetite). He wanted me to keep those things in mind and also thought slowly increasing the dosing, instead of going straight to proper dosing, would be better (minimum dose to achieve the desired results). So all in all, he received the articles well and did not push back. I think it’s much harder to argue against articles that are written by their peers versus thinking I obtained my information “off the internet”. Theresa C., Facebook
“So doctor appointment went as expected. Doctor does not agree with Prevacid [dosing] and TCM, and let me know it. When I asked for a script for the Elecare, she said no. I had to fight for it, and when I asked if the insurance company would want a letter stating this, and how he has been through all the formulas, she acted like I was putting her out. I’m a nurse, so this ticks me off, as patient should not be treated this way, ever. She insisted I see a GI specialist. I told her I respect that she does not agree with [the dosing of] meds [that I am giving my baby], but I will be continuing [to give them]. He only gained 3 oz in 2 weeks. When I said ‘he didn’t loose weight,’ she looked at me like I was nuts! I was very scared, as I’m a nurse and I know Docs. I knew my ped was not going to approve, but to help my son it’s important she know everything he is taking. Also when all this starts to work ( fingers crossed), maybe she will re- think what she does in her practice. I know she thought I was nuts, but probably nuts enough to go look on-line at what I was talking about. I also did not go to the appointment alone! I made my significant other come with me. I needed the support. In the end, the doc and I had to agree to disagree, but I’m still going back in 2 weeks for weight checks, because it’s important. Maybe …..just maybe we can teach each other.” Beth S., Facebook
“We go rougeish. I’m honest with my ped about what dose I give him. It’s often higher than “what she would recommend”. She tells me every time that she has to say it’s higher, but she knows I’m going to do up to the MARCI dosing as needed. At this point we laugh & move on with the appointment. If we had stayed on their dosing, he would still be Failure to Thrive (FTT).
…We had gone to 3 different peds who all refused to increase his dose even though he was losing weight, refusing to eat, screaming all day. That is not “colic“. That is not “babies cry”. I’m the only advocate my baby has. I know most people think doctors know everything, but I’m in the medical field & can tell you, we don’t. A lot don’t keep up with continuing education & think about it. There’s a lot that a pediatrician would have to learn about. Not just reflux. This group has shown over & over again that the dosing needs to be higher than what the pharmaceutical companies tell peds to use. We’re all case studies. We’re all technically a form of research, not the highest, but a form. When we switched to our 4th & current ped, she immediately laughed at how low his dose was & immediately increased it to 4x what it previously was. He improved, but not completely. I found this group. Learned about MARCI dosing & when he flared up I increased it myself. When we ran out I would make an appt to get his weight checked & the dose increased. I took in the research from the website. [(3) links: RESEARCH to REVIEW and SHARE w/ you Medical Providers: (1) research references (2) research articles and abstracts (3) PPI Dosing Memo] We had an honest discussion about what dose she recommended vs what dose I was giving him. In the end, I told her I was going to do what worked & was right for my son. She basically said, with a wink, ‘I can advise against it, but I’m not in your house giving him the med.’ Hence. this is why now we laugh about it.
This group [Facebook group affiliated with this website] can feel like med-pushers at times, but it’s because we’ve been in the position of a FTT baby, stressed beyond belief, no sleep, etc & are trying to save other moms from that. The best way to help your baby is to have us help you form a plan [see top of this page] & you TELL your doctor, ‘this is what is working, this is what I’m doing.’ If they say no, find a new doctor. There are ones out there who support higher dosing. [please review all of yours, to help others!] ” Christine W., Facebook
“In the end, WE have gotten what we needed in terms of dosing; here is Mason’s story, with me being as brief as I can be:
Mason was diagnosed with reflux when he was three weeks old. Our Ped prescribed Zantac. She was very conservative, however after hearing from me on a weekly basis, she told me to start calculating my own Zantac increases per Mason’s weight. I did this religiously, until it just stopped working. [see quote at top of this page!]
Ped was uncomfortable giving a PPI and sent us to a PedGI. PedGI gave Prilosec and Zantac together, which I thought was going to work, but it didn’t. After researching proper PPI dosing, I was still hesitant to dose on my own, so I constantly bugged the PedGI about the meds not working. To get me to shut up (I think he thought there was nothing wrong with Mason) the PedGI gave into my requests for an endoscopy. A hiatal hernia was discovered.
I thought that this would be a turning point, but instead of helping me medicate my son better, the PedGI told me that he couldn’t do anything further and that I needed to see a surgeon.
Needless to say, I scheduled an appointment with a surgeon. During this wait, I took Mason to see my own personal doctor. I presented him with all the proper dosing info and told him, “I am going to do this and you will help me.” He reviewed all the information [(1) research references (2) research articles and abstracts (3) PPI Dosing Memo] and was totally supportive and onboard with my decision to home compound and dose according to MARCI standards. In addition, I got a prescription for Neocate and we began our journey of healing. I am even going to point out that for a short time in the beginning, we dosed ABOVE MARCI as that is what Mason needed. Mason was 8 months old when he finally started being medicated properly.
By the time we got to the surgical consult, Mason was doing so well that the surgeon advised against repairing the hernia as we had the reflux symptoms under control.
I started weaning Mason from meds after his first birthday… Going very slowly, he was med free by 18 months.
Mason is 5 now. He still has flares from time to time and I treat him with a home compound, using Zegerid.
All I can say is, in hindsight, I’m disappointed in myself for waiting all those months. However, I’m so very proud of myself, too in that I turned it around and did the best possible thing for my son… Eliminated his pain.” Jaclyn, Facebook
“With my oldest, we pushed until our then-GI moved her to Marci dosing (after learning about it on infantreflux.org!). With my 2nd, (ds1) after not getting relief, we switched GIs. That GI gave us Marci dosing of solutabs (which worked great for my oldest), but they never worked on my middle, so I made the jump to buffer babies with Prilosec, under the GI’s approval, and my son finally found relief. Buffer Babies involved grinding tablets & mixing carefully… I showed it to the dr & he was quite impressed & totally on board. I always went there well-informed and confident. You have to show them you’ve done your research & aren’t just a hysterical sleep- deprived person (even though I was often also that! lol)
With my 3rd, (ds2) the GI was on board right away with zegerid & gave Marci dosing. My ds2 had other issues, and wound up ftt and the pediatrician was pushing for admitting him for a feeding tube. I pushed back knowing that there was still more we could do, and the GI sided with me & told me that he enjoyed working with me & trusted my knowledge/ judgement. Turned out my ds2 also had a lip & tongue tie, which one got fixed, my son started gaining weight & growing! My biggest take away is go in there informed & always fight for what is right for your child!” Denise B., Facebook
“My ped GI is ok with 30mgs a day of Prevacid, technically; I never talked to him per se, but I told the nurse that I had done the calculations using the Marci Kids dosing and with her [my baby’s] weight she was at like 29.something [dose of PPI] for the whole day, so I just rounded up since I’m using otc Prevacid. I know it says to do it 3x a day, but I wouldn’t be able to split the granules evenly for 3 times, so I just use 1 pill twice a day. I made sure the nurse knew that she was screaming in pain nonstop and choking on her spit up. I basically told her I was going to put her on the max dose and then lower it if needed after she had time to heal from the stomach acid.” Heather M., Facebook
I’m not trying to be negative about doctors (we need them, appreciate them, and and respect them), but when it comes to severe infant reflux, they simply don’t know how to treat it properly!!! I hate it when they throw around percentages like “only 5% need a high dose.” How do they KNOW that??? My guess is that MANY, MANY more babies actually NEED it, but the moms are told their baby has colic or gas and so they accept that, stop fighting the doctors, and just suffer through. Therefore the doctors don’t know how many babies truly need a high dose.
The sad fact is that many babies do outgrow this, so it is very easy for doctors to keep brushing it off and not really do further research on it because once the babies outgrow it, the pressure is removed.
I can tell you that if EVERY mom of a reflux baby pressed her doctors the way I did, they would have no choice but to take a deeper look. But unfortunately many people just assume that the doctor must know what’s best and they stop fighting.
After pressing, and an initial unresponsive Doctor, once I began the Marci dosing and compounded at home and my doc saw the incredible improvement…she was on board! (And I might even say impressed!)
Sorry if this sounds like a rant, it just breaks my heart how many babies and moms suffer UNNECESSARILY because their doctors have no true in depth knowledge of infant reflux.
Keep fighting for your sweet baby. YOU know what he needs. Do what you feel is best for him. Home compounding isn’t scary at all once you’ve done it once or twice. There’s a lot of moms here who are happy to help if you need it. Don’t feel pressured to home compound though, either, if it’s not what you want to do – trust your mommy instincts and you will find the solution!
Hugs!!! Katie K., Facebook
Katelin R.: In my experience, medical professionals often experience “sticker shock” regarding the drastic increase in meds. I’m married to a pharmacist, whose knee jerk reaction was to tell me I’d kill our baby if I dosed her according the ppi dosing chart. Then he actually sat down and read the research and some of the published findings, and after much deliberation, couldn’t find a single reason why this dosing could actually harm our child. We went from having a failure to thrive 8 week old, who 2 different children’s hospitals said needed a feeding tube (due to her refusal to eat due to reflux pain), to a baby who at her 9 month well visit was in the 90th percentile for height and 70th for weight. No feeding tube needed. I absolutely attribute this to finding the research, subsequently this group, and home dosing OTC Prevacid following the research behind the ppi dosing guide. My GI and Ped are fine with her dosage, after noting her remarkable progress. She started drinking from a bottle after only a week on properly dosed Prevacid (she had been on a low dose for 3 weeks before we tried a correct dosage). I had been syringe feeding her around the clock up until then. Only you can decide if this is the correct path for your child, but don’t let the shock over the amount of meds deter you. Do your own research, read the studies and literature. If you decide to home compound we’d be happy to help.
Ok, the thing you said that stuck out most to me is that you said your baby is not eating well. It could be a formula issue, but my guess is it’s because eating is excruciating. Imagine trying to eat with an eroded esophagus. Baby’s natural reaction to the pain is to stop doing things that exacerbate it (such as eating). If you don’t get him some help soon you are going to end up with a feeding aversion that’s going to plague you for a LONG time. Do not wait! Please! No one wants to medicate their child, but if you let his aversion continue, it’s going to get worse. While conservative dosing is nice, if your baby’s pain symptoms are effecting his eating you need to attach this with guns blazing. I don’t have to tell you how quickly a baby goes down hill when they can’t eat comfortably. To me, this is alarming. You absolutely will end up with an NG tube. You can’t tell me the risk associated with tube feeding is less scary than giving a medication at a dosage that many GI docs are more than happy to dose. If it was me, I’d start dosing this sweet boy properly immediately and I wouldn’t look back. Hope we can help y’all!
Cath De writes, January 2018: A few very important things I humbly learned after 7mo of watching our baby girl struggle with reflux – 1) DOSE PROPERLY. Two weeks of an ‘acid battle’ is no match to leaving baby in a constant acid battle for months and months because they are not properly medicated to beat reflux. 2) DONT BE AFRAID to dose properly according to Proper Dosing. It truly is what is best for baby. Our little one couldn’t swallow solids. Things are finally getting better!!! 3) ADVOCATE FOR YOUR BABY. I printed out pages of info off of Infantreflux.org how PPI drugs work (they are Prodrugs – meaning your body only uses what it needs so you cannot overdose!!!), how babies metabolize faster than adults (3 doses a day are better than just one or two) as well as how to calculate dosing based on baby’s weight. Our pediatrician and GI doctors (we’ve been to two) all wanted to dose way less. I finally sent over all this info to both GIs and one called me back and we discussed everything. He supported our desire to follow proper dosing after reading the sources and info from the studies I showed him. We got a proper prescription THE SAME DAY. Happiest of moments for us!!!!! If you cannot find a doctor to help follow Proper dosing for medication, even after showing them all the info… go rogue!! This group of ladies are lifesavers and will help you make your own medication. I hope more doctors become aware from moms like us that there is other research out there that can help babies with reflux. Thank you to everyone for helping me get my little girl healthier!! ❤❤
How to find medical provider recs: There are two (2) places to look for a ped gi review. All I ask in return is for YOU to review YOURS!!!
- The first place to look is (1) www.infantreflux.org/directory &
- (2) there’s a post on this page where I BEG for reviews (they eventually make it into the directory on the site). Click these words to access this post!
(3) links: RESEARCH to REVIEW and SHARE w/ you Medical Providers: