Patients
Patient Education
Abby's Story
Lindsey's Story
Ben's Story
Emily's Story
Haley's Story
We are seeking personal stories to add to the MARCI-Kids website.
Do you think it would have helped you to read stories from other parents with reflux babies to know that you are not alone? Then we need you! Other parents need you!
What we want to do is offer feedback, stories of struggles and successes, and possibly contact information from parents who are currently, or have worked their way through raising a child with GERD. If you feel that someone may be going through experiences similar to yours and would benefit from your story, we want to hear from you.
Please write us with your story:
Also, please include whether or not we could put your email information and/or phone number on our website so others could contact you directly. Thanks so much for considering this, and we look forward to hearing from you! Please email your letters to info@marci-kids.com.
Abigail Elizabeth was born on February 2, 2006 and weighed 6 pounds 13 ounces. Immediately after she was born, we noticed that she did not have a very strong sucking ability and seemed to refuse the bottle. Getting 1/2 ounce into her at one time was a miracle. The nurses and doctors just figured it was taking her a while to get the hang of how to drink a bottle. After we got her home, we started to notice many of the classic symptoms of reflux in babies. Our now 4 year old daughter also had silent reflux, and as soon as we started noticing the back arching, constant screaming in agony, not sleeping and resisting feeding, we knew what we had on our hands once again. We contacted our doctor (who fortunately was our doctor with our first child) and said we felt that Abby also had reflux. He wanted to try a different formula first, which we went along with. Things just seemed to go from bad to worse, so we had an upper GI scheduled for her when she was only 2 weeks old. As we watched her drink the barium, we saw it filling her little tummy, then immediately shoot back up her throat several times - reaching her mouth, but not coming out. She gulped it back down and started to cry. Like our first child, she had silent reflux. Our doctor started her on Pepcid (which did work for our first child) but after almost a week on Pepcid, it wasn't even making a small difference, so he put her on Prevacid solutabs. After almost 2 weeks on the Prevacid with no improvement noted, our doctor said he really had no idea of what to do next so he referred us to a pediatric gastroenterologist in a town 3 hours away but we couldn't get her in for almost a month. Well, I felt that I had to do something to help her out so I began searching the internet, trying to find help. Through the infantreflux.org message board, I became aware of MARCI-kids and the wonderful work and research you have done regarding reflux. I read all of the information on Zegerid and with the help of Joel Andrews and Dr. Jeffrey Phillips, I was able to convince my doctor to let us give it a try. At first, he was hesitant to agree to the dosing, but with more information provided to me by Joel, he did agree to let us try it. After just a few days, the symptoms decreased dramatically and by 2 weeks, they were gone - and all I had left was the happy little baby that every Mom expects when she has a child. Since then, we have had to increase her dose a few times due to her gaining weight, and it has been great at controlling the reflux. It is so reassuring to know that [MARCI-kids team members] are only an email or phone call away if we would happen to have any questions.
Lindsey’s reflux began at 3 weeks of age. At her 4 week appointment she was diagnosed with reflux and prescribed Zantac; 15 mg, 0.5 three times daily. A week later things had just gotten worse and I called my pediatrician again to discuss.
Dr. Phillips provided advice immediately after the first time I e-mailed him. He gave me tips on how to approach my doctor and proper dosing instructions. I have had an extremely positive experience working with him. I brought in literature about the medication to my pediatrician and she prescribed Zegerid. Even though she had never heard of it she was willing to try. The pharmacy did not have it in stock so we had to wait a day to start using it.
Zegerid was a miracle drug for my baby. She started at the following dose: 40 mg packets mixed with 6.5 mL water and 10 mL Mylanta – 6.5 mL of the mixture 3 times daily. After one week we reduced the dosage to 5 mL. After a few days on the meds she was noticeably calmer and more comfortable. We saw a decrease in choking, crying and hiccups. The only drawback was initially not able to handle the dose from the syringe so I had to pump and add it to a bottle. That has changed and she is now able to take the dose orally from the syringe.
Now she is 5 months old and still doing very well. Zegerid has made her a much happier baby. She is able to enjoy life now instead of feeling miserable all the time!
-Kristie
When Ben was two weeks old, after we had already taken for granted that our baby was healthy, his reflux began to appear. He was exhibiting many of the classic signs of reflux: arching, screaming, food refusal, multiple awakenings, vomiting. We tried whatever we could to give him any amount of relief – changing foods, positions for holding him or sleeping, trying new medications after they would stop working or after discovering that some actually made him feel worse.
It took several long months to get a diagnosis of reflux. We were told everything under the sun to make our search for the answer a difficult one – from “Stop reading so much. Leave it to us!” to “he’s just trying to get attention,” to blaming the mother!
When Ben turned seven months old we decided it was time to make a significant health-care team change, and connected with the University of MO group (long before the MARCI-kids site was around). Finally, we had found a team that worked with us - to blend our parenting experience with their expertise to get the most complete picture of Ben’s health that we could. They believed us and understood that the more we knew the better we would feel. It has made a huge difference in the quality of Ben’s life. Now we have a local gastroenterologist who supports us 100%
Ben may or may not outgrow his reflux (he is now 5 years old); it runs in the family. He is a special case, in that he is still on an extremely limited diet, and would have a pretty tough time without his reflux medication. [The MARCI-kids team’s] PPI dosing recommendations probably saved our family. Before we came to the University of Missouri, Ben was awake up to 10 times a night (on just Prevacid capsule). The first night we were there (and took Caracream) Ben slept through the night.
-Mike and Tracy Davenport (authors of Making Life Better for a Baby with Acid Reflux, Making Life Better for a Child with Acid Reflux, and Acid Reflux in Infants and Children, as well as http://www.refluxguide.com)
Emily was born a healthy baby but very quickly started to cry inconsolably for hours. She always breast fed well and put on weight, so her problems were described as colic by both the health nurses and our general practitioner. She was unable to be laid down on her back as she would scream – waking within 5 mins if put there in a deep sleep. I spent the days with her carried upright in a sling, and nights (when she finally was so exhausted from screaming) on my chest with me sitting up in bed. We tried various colic mixtures as well as zantac (ranitidine) syrup with little relief.
At 9 weeks old we saw a specialist who diagnosed silent reflux from history and watching her repeatedly swallow in the consultation. Emily was started on Nexium (esomeprazole) once a day and she started to improve immediately. This improvement continued for another 3 weeks. We then had a happy but overtired baby who had no idea how to go to sleep on her own. After lots of reading and research I did a cry to sleep program. After a few days she “got it” and saved my back!
At 5 months old, Emily started to have problems going to and staying asleep and at 6 months we realized that her reflux was really not under control again. We were advised to try the Nexium twice daily which only seemed to help for about 1 week. I had been doing a lot of research by this time and found the marci-kids site which made a lot of sense to me. I took the information to my specialist and he agreed to let us try three times a day dosing. He also gave Emily medication to increase gut motility which I stopped due to side effects. The increased dosing of Nexium has Emilys reflux under control, but has also caused constipation and wind/cramping. She is now on medication for the constipation and has started limited solids with various successes.
Emily is now 8 months old and it has been one of the most challenging times of my life. For all her reflux problems she has been remarkably healthy and happy for which we are very grateful. It continues to be a challenge as it sometimes so hard to work out why she is crying – is it the reflux or something else??
We hope that in the future we will be able to reduce the various medications and keep Emily healthy and pain free.
I have been using CaraCream with my daughter who is now 2.5 years old since she was a baby. It's been the only thing that's helped her. I do advocate about marci-kids to others as much as I can. But to be honest, I've always had some persistent lingering doubts.
I have followed the marci-kids recommendations primarily due to a leap of faith when all else failed and my daughter was on the verge of a feeding tube and malnutrition. However, I had to doctor-hop from one to another to find someone who was in agreement with the dosing recommended on your site. In the end, this never happened. I saw 6 GIs, two feeding specialists, a pediatrician, and two infant psychiatrists, and none of them believed what was written on the marci-kids website. They said that it was false information, and others added that marci-kids was working for the drug companies hence the reason for higher doses. With respect to all the research that was done on compounding and PPI stability, I went to 8 pharmacies- two of which were upscale and well known pharmacies in our city- and none of them had ever hear of marci-kids guidelines on how to make a proper compound, or the amounts of buffer needed or how to keep the drug stable. None of them would prepare it exactly as marci-kids recommended. In the end, my support of marci-kids cost me the respect and aid of one of the top GIs in our city. He didn't agree with the recommendations and also didn't agree with how to make proper suspensions, and that tension made it impossible for my daughter to remain his patient.
Even when presented with information from the website including the literature cited and printout for physicians about dosing, I've been told by each doctor we saw that marci-kids recommendations are not in support with the guidelines in treating pediatric GERD as set out by the NASPGHAN (North American society of pediatric gastroenteroloy, hepatology, and nutrition), and that these guidelines are considered the gold standard for treatment. I work in a hospital and have done a review of the literature using the "Up to date" database which is supposed to reflect the consensus of the current literature available, and the summaries from that search have also reinforced the fact that I've been treating my daughter following marci-kids guidelines based on a gut feeling. The recommended doses do not even approach what marci-kids suggests. I pray everyday that I haven't made a mistake for my daughter's health in the future.
This brings me to my question: Why have these recommendations, if they really are the "current research" not been adopted by NASPGHAN? I asked NASPGHAN this myself, and no one responded. Further, why have the results of how to compound PPIs correctly not been disseminated to compounding pharmacies who are making these products? Lastly, why has the rest of the marci-kids dosing information not been disseminated beyond your website?
If marci-kids really wants to "reach out" the way to do this would be to educate physicians and pharmacists using more traditional and reputable means than an internet website. Physicians are always skeptical of anything that patients bring in from the internet, and marci-kids is no exception. This puts parents in a position where they are desperate for help, and clinging to marci-kids recommendations as the hope for their children to get some relief, all the while fighting doctors who have never heard of this information and who don't have the backing of the medical community to follow those recommendations. It causes the parents to become belittled and ridiculed in trying to find help for their children.
As I said initially, I am a supporter of marci-kids. This primarily stems from the help that I was offered by Joel (a former lab manager)- he reached out to me with help when I needed it and I trusted him. I would like to be able to share our story with others through your site, because I know deep down that marci-kids wants to help, and that the recommendations do work. I am looking for help to know with confidence that in sharing our story, I am actually helping others in the long run and not harming them.
Do Haley's mom's questions sound familiar to you? Please go to our FAQ page where we have addressed these questions as well as others.