Testimonials

My little GERDling: I was unable to exclusively breastfeed my firstborn due to low milk supply, so she was supplemented with formula starting at 4 weeks old due to failure to thrive. She had what I would call normal baby reflux or rather she was a happy spitter but did well on a gentle formula. When my second child was born in August of 2014 I was excited to get another shot at breastfeeding. Our breastfeeding relationship seemed to be going very well, as a newborn he nursed often, and by often I mean every 30 minutes to 2 hours, but on average more like every hour for the first 14 days. He always wanted to nurse and I quickly became exhausted. With regular weigh-ins, it became clear that I will never produce enough milk to breastfeed exclusively so once again we were face with supplementing with formula. We started with a standard formula but discovered quickly that it was not a good fit. He spit up frequently after formula feeds. Our feeding schedule was on demand, I would offer the breast first, give him a bottle of pumped milk if I had it then formula, then pump. As he got older (about 8-10 weeks) and started eating larger volumes we noticed he was very gassy and would always cry after feedings. If he fell asleep during a feeding he would quickly wake up crying, angry, upset and arching his body. Every time he would wake up he always seemed very angry, upset and his face would contort in agony as he wailed, cried and arched his little body. In addition to these behaviors I noticed he constantly wanted to nurse even if he had a full stomach. Unlike my first child who got angry when my breast was empty, this baby didn’t ever seem to mind that I did not have a full meal available for him. I co-slept and nursed him every night ALL night. I was starting to get very frustrated and I my gut instinct was telling me that something was not quite right. By this time we were feeding him Enfamil Gentelese. His symptoms progressively got worse and more frequent. As a breast milk and formula fed baby there is not much information out there about what normal stool should look like when babies are being fed both breast milk and formula. I was second guessing myself often when I would wonder if his stool looked normal. I could swear that he almost always had mucous in his stool but then I wondered if that’s normal with formula fed babies and I just never noticed it before. He also always had a small diaper rash around his anus that just would never go away no matter what I put on it or how I protected it. I thought this was unusual. When he was asleep he would toss and turn, he would grimace and cry out, you could hear the gas in his little body moving around and he frequently passed gas audibly. He arched his back and stretched out his whole body a lot while sleeping and always very quickly after finishing a meal. This arching was frequently accompanied by crying or moaning. I really felt strongly that my now 3 month old was in pain, and I thought that his pain was worse after eating. Once we started supplementing with formula he was gaining weight well, a little too well, he wanted to eat all the time but we were careful not to overfeed him. As a nurse and a GERD sufferer myself I started to wonder if he had reflux and if his reflux was worse than just normal baby reflux. I had a new friend, who had a child with reflux and when I suggested that I thought Alex might have reflux, she agreed and said her baby had similar problems when he was the same age. She gave me great advice and told me about the Infant Reflux: Support for Gerdlings facebook support group. I promptly joined and started seeing stories similar to mine. I tried an elimination diet, twice, we tried several different brands of formula, different types, we tried the hypoallergenic formulas, we had already tried everything we could with the exception of trying soy formula or prescription formula or medications. At this point I knew he had reflux and I wanted advice on how to treat him. We were blown off by several doctors who said, “he is just colicky”, they sent us on our way and told us to give smaller feedings more often, try gas drops, elevate him after eating, and that because he was gaining weight well that he likely didn’t have reflux. I tried to be respectful of the doctors initially, I wanted to give them the benefit of the doubt that they knew what they were talking about but it was clear that these doctors were not used to treating reflux and either weren’t comfortable with it or weren’t knowledgeable enough to treat it appropriately. They refused to give us a referral to a GI specialist (hooray for Navy medical). The doctors I saw were not very knowledgeable on the subject so I started doing my own research and discussing my findings with the pediatric doctors at work. I had decided enough was enough and I was going to demand medication, but first I wanted to switch to a soy formula to see if it helped with the diaper rash and the reflux. We were on the soy formula for about a week before starting any medication. Thought the formula switch was not the miracle cure we were looking for, the amount of mucous decreased and the diaper rash went away completely. After talking to my doctor co-workers and doing some research I decided I wanted to start with a PPI instead of an H2 blocker. I ultimately was able to bully one of our Navy doctors into prescribing a PPI. Our baby refused to take it no matter what I tried and I was limited with what compounding was available. With the support of my co-workers, the research on this site and my research, I decided to try the Zegerid home compound, hoping that my baby would take it with a bottle and that the immediate release would be the answer we were looking for. My friend Stephanie and this site have been a life saver. Once I started medicating my little boy with the zegerid home compound, we saw improvement in about two weeks. We were giving him 5mL of the compound twice daily. His first dose was given with his first bottle and his last dose was given with one of his last two bottle before bed, taking care to try and get his last dose in by 6pm. He was finally starting to sleep more, he wasn’t in as much pain, and he seems to be a much happier baby. We are still doing twice daily Zegerid compound and it is continuing to help with his reflux. He slept in the rock and play until about 6 months, which is about how long it took us to get good control over the reflux. Once he was sleeping in his own crib he initially had to have the mattress elevated but now at 7 months he is able to sleep in his crib flat, or usually I see him sleeping on his side. I briefly tried to go back to a dairy based formula but that was a clear failure within 24 hours. He will stay on soy formula for now. We have been trialing solid foods over the last month with some success. Teething and solids have definitely caused some mini flares but for the most part it has mostly only affected his ability to nap during the day and not his nighttime sleep. At his 6 month follow up I was finally able to see a doctor I trusted and she agreed with the plan I had mapped out including my intention to seek out better advice from our doctor once we moved and possibly a GI doctor if needed. I don’t know what I would have done without the information I found on this site and the Facebook group Infant Reflux: Support for Gerdlings.

Interview with Joi W. about her two refluxers, Failure to Thrive... How did you know it was reflux? What worked, what didn’t, what helped, what did you learn and from whom, from where? A: For the first child a doctor asked about 5 questions and diagnosed him, no tests done, said he had "classic" signs, and then when my second came I knew right away, same classic symptoms, arching back, full feed vomiting, coughing/choking even when not eating, losing weight, losing percentiles on the growth chart, not wanting to eat. Elevating the crib helped them rest, so for the first we used books, for the second we bought a 7in wedge for under the mattress, I rolled three towels, one under her bum, and one on either side of her duct taped to mattress with a sheet covering it all over top. I learned the most from the fb group Reflux Rebels and taking the Marci dosing information to their pediatrician helped get them the dose that provided some relief for them. Also changing from the compounded omeprazole to nexium helped tremendously. The fisher price infant to toddler rocking chair was also great at keeping her at the perfect angle. I also used a small wedge under her playmat. Did you breastfeed? Formula? If breastfed – try altering your diet? with what results? Formula: did you switch? why ? was it helpful? etc. A: I breastfed for four months with each child. I would have longer but because they didn't eat enough to thrive, I needed to know exactly what they were getting, also with breastfeeding being supply and demand if they were not demanding it then I wasn't making it, I never could pump enough, and even exclusively pumping I was lucky if I made a few ounces at the end of the day. It just wasn't worth it, I'd rather use that time to play with them then pump. Formula is not the devil society makes it out to be and there is nothing wrong with using it. Also I tried the elimination diet while nursing so cut out all dairy, and it didn't seem to help either of them. We went through lots of formula trials, I wish I would have put my first child on a dairy free formula, but I didn't know what I know now then. My daughter did ok on nutramigen, no miracles, but better then all the others we tried, when she was over a year, we tried whole milk and it was a definate fail so glad she had been on a dairy free formula. Did you try anything holistic? chiropractic care? probiotics or enzymes? anything? A: just probiotics but didn't help either child. When and how did you start solids? how was it? A: For the first child it went awesome, he liked them, the very first time he ate an entire jar. I was told to start early since he had reflux, so like 4.5 months, and some days he would eat 6 jars, but he did not eat enough formula ever so he was compensating for that. The only problem was he had texture issues so he would not eat home made puree, only the store bought jars. And he would not move on to stage 2 foods. Finally I just went right to finger foods and he did very well at that, but still never ate enough to thrive and was always at the bottom of the charts. My second ended up with a feeding tube at 5 weeks of age due to her not eating. So solids did not work for her, she wanted nothing to do with them and would gag and vomit if she or I put them in her mouth. What words of advice do you have? A: Just try to follow your childs lead, don't try to be like every other mother with a child who doesn't have reflux. So when my child refused to sleep in his crib for naps and would wake the second I layed him down, I held him, for his entire nap, every single day. And I held him for an hour or even two at night before I could lay him down without waking. If I couldn't leave the house that day because my daughter couldn't stop vomiting I didn't worry about missing a playdate, just rolled with it, changed her clothes fifty times that day, did yet another load of laundry and called it a day. We bought a leather couch so we could clean it easily, we washed every part of the carseats that we could to get the vomit out, and would have been helpful to have two. We got a cheap area carpet and shampoo it often. We've accepted we won't have nice things. I accept the sleepless nights, and don't expect them to sleep through the night so not disappointed when they don't. I stock the backyard with plenty of toys so that if it is a bad day I know I can take them out to play no matter what. And I know that the term "they will grow out of it" is not true in my children's case or myself even, so acceptance helps. Any products that helped? Bottles, swaddling, car seat, swing, babywearing, etc. Books? A: Playtex ventaire bottles worked well for my son and I was very pleased with them. My daughter would never take any bottle ever. Both took MAM soothers and only those, refused all others. Baby wearing did not work so well for either of them, I could not find anything that was comfortable for them, the only one I could use was the baby bjorn, everything else made them vomit Maybe more about what to do if your babies won't eat/slow weight gain? Procedures: Swallow study? Nothing? Something? Endoscopy? Ph probe? Allergies? Food restrictions? Theres not much to do if you child won't eat, i had one child with medical intervention and one without, I took both to doctors, but one they decided to put a feeding tube in and one they didn't, they were both late for milestones regardless, but the child without feeding tube is either 10th or FTT and the child with feeding tube is like 85th, but she won't eat, anything ever, and is completely tube dependant, I"d rather have an oral eater any day even if he is small. My second had a swallow study later on; didn't show anything, and these test aren't always accurate for showing reflux. She's had scopes, too, and lower GI scan, to rule out other reasons why she might not be eating; no ph probe. Her GI says she does not have an allergy/intolerance to dairy, but when I gave whole milk she vomited solid banana shaped logs of undigested milk in the form of cottage cheese looking vomit, it was very dangerous; I don't give her any dairy. How old are they? Were biopsies taken during scope? (& I meant swallow study to look at mechanics of swallowing, not to determine reflux) she had a swallow study for another reason, she was aspirating because of another problem but they fixed the problem and does not aspirate now. all biopsies were normal; my son was also tested for celiac and normal; son is 2,5 years, and daughter is 15mon. Are you content w/ your children's care/drs, etc? How did you find them? not content with any of them, no one seems to be able to tell us why she won't eat, she doesn't have oral aversion loves to put food in her mouth and chew it, but won't swallow, doesn't seem to know how, but she did nurse for the first f Where are you? Maybe there's a Doctor listed in the Directory? I'm in Canada, we have to be reffered to a GI by a pediatrician, he has already refferred us to a new one, but it will take months… ~Joi W., Facebook

Two Refluxers, Outgrown by Six Months (Shannon L.) November 10, 2014 I've had two babies with reflux. The first time I had no idea what it was and just thought it was colic. Finally at 8 weeks old we figured out it was caused by mspi and fixed the problem with specialized formula and Prilosec over night! When my second reflux baby came around I knew exactly what to watch for and sure enough at 3 weeks old I realized we were dealing with the same issues. Knowing what to do saved my sanity and he ended up being the most easy going baby! Reflux is hard but there is a light at the end of the tunnel. Luckily both of my refluxers outgrew it by 6 months old. [Great! How about a little about the symptoms - how you knew to switch to what (specific) formula- how you knew baby needed the Prilosec - who treated your baby? There's a Directory on the site, too, so dr recommendation(s) - good, bad, 'eh'- what are poops supposed to look like on the special formula? How odd you start solids? Switch to milk? At 12 months ? Later? How to make that transition, etc.] My babies had the classic reflux symptoms, colic, arching, crying after spitting up. After lots of googling I read about mspi and my first refluxers had very mucousy poop that didn't look normal for a breastfed baby so I bought some ready to feed alimentum and in 24 hours he was a different baby. I also found Marci kids online and ordered their buffer babies and treated his reflux that way. With my second I knew he had reflux and mspi when he started getting colicky and then had bloody stools. Marci kids no longer sold buffer babies so I found their homemade recipe and made and dosed myself. When reading about colic I read that most babies are over it by 4-6 months, and since I firmly believe colic is really mspi and reflux I figured that was the age babies start outgrowing it. I first weaned the meds. Just lowered the doses and then got done to one small dose a day and after no problems with that just stopped the meds and had zero issues. I then slowly mixed my pumped breastmilk in with the alimentum and after a week we were totally fine and transitioned off the alimentum. [Thanks! Did you feel pressured to quit/keep breastfeeding? I don't have to publish this part, if you don't want, but I'm always curious where the medical profession stands…] I felt pressured to continue breastfeeding so I attempted the elimination diet and kept messing up. It was just too stressful so I pumped and saved the milk hoping I could give it to them soon and I was lucky enough that I could. [When you gave the Prevacid , was your dr on board w/ higher dosing? Did you just do it yourself? If so did/how did you tell dr? Dr recommendations for the Directory? The good, bad & 'eh.' How about alternative approaches like chiropractor, probiotics, aloe, slippery elm, etc?] My dr prescribed Zantac at first and I never told him when I went to dose myself with buffer babies and Prilosec. I read every peer reviewed study about reflux and meds with babies so I felt confident it was safe and just went ahead and did it myself. I didn't try anything alternative since I had such good luck with the formula and meds. Plus I knew hidden dairy could be a big pain and didn't want to rock the boat. [Are these the studies? Sorry for the questions, I'm just thinking ahead to mamas who'll come across your post] No problem. I'm not sure exactly which ones but some of those do look familiar. The ones about the half life of the meds in infants, the study on the elderly, and the 1993 safety study. There was another one I think came out in 2010 or 2011 about effects of long term use but I can't remember the specifics. No problem with the questions! I had my first refluxers in 2010 and did most of my research then so don't remember everything, especially since I've had another refluxers since him. It starts to run together a little lol. I think this is the 2010 article I read I also googled "pediatric use proton pump inhibitors" on the scholar part of Google. [so did you bf baby #2? Or go straight to alimentum? rtf or powder? Any trouble starting solids? What age?] I breastfed for the first 3 weeks then gave formula for the next 5 months then he got pumped breastmilk. I had to use rtf, they would not tolerate the powder. I started solids at 6 months and had almost no problems. With my oldest I tried at 4 months I think and it didn't go well so I waited and at 6 months it was better so just waited until 6 months with my second. I started with squash, apples, and prunes I think? [How about sleep? Anything to share?] Sleep was awful before the reflux and mspi was controlled but once we got things figured out they both slept great and were sleeping through the night at or before 3 months old. At its worse they were up every 30 minutes. ~Shannon L., Facebook~

It's not my Milk! Tongue & Lip Tie Laura, your website is amazing! Are you a doctor? I'm trying to go through it. I've been off of dairy for almost a month, no soy, chocolate, gassy veggies, onions, garlic... I took him yesterday to a homeopathic doctor. He gave him Tummy QI to balance his digestive system. He's been on Gerber Colic Soothe probiotics for about a month now. I'm pulling out my hair!!! I don't know what to do anymore! I want to take him to the chiro because a friend of mine said that when they're in the birth canal for a while, I was pushing for like 45 minutes, their diaphragm can come out of place and cause the reflux. Help!!! I'm very into natural. The doctor originally had him on Zantac and I took him off because I wasn't convinced it was reflux. I took him to the ENT because he makes noise sometimes when he nurses. He scoped him and that's when he saw the reflux and his larynx is inflamed from it. ...I don't know what to do anymore. I spoke with my pediatrician and he told me to go to the gastro once and for all to do the PH testing and to see if the Prevacid is good enough for him or if he needs to add something else. He also said that he'll tell me if I can continue nursing or not. I'm very nervous about that. I don't want to stop nursing!!! I keep reading online that breast milk is the best for this but he keeps on saying that if the gastro thinks otherwise because maybe he's just too sensitive to something(s) in the milk, then I have to stop. What do you think? I've already eliminated everything except gluten. That would be my next step. Hi! I'm still trying to figure out this whole thing myself. Thank G-d he's getting better on the Prevacid. I took him to the best known gastros here in Miami the other day and she told me that no further testing is necessary and that she wants me to pump 1 ounce of milk and mix it with 2 teaspoons of rice cereal before every feed and only feed him 1 side. I don't agree with giving rice cereal at 3 months if my baby is growing excellent and gaining weight at an amazing rate. He's already 13 pounds! I am meeting with a lactation consultant this coming week because after immense research on my part, my main problem for his spit ups could be my very fast let down and the fact that I make too much milk. Hi! An amazing lactation consultant came to my house yesterday and she diagnosed my baby with both tongue and lip ties! He's now 3 months and I'm so upset because when he was about a month old before I knew he had the reflux, I researched a ton about colic and gases and it kept saying to rule those 2 things out. I took him to the pediatrician and she said that he had neither!!! Poor thing! Hopefully he'll get a lot better after the procedure. She's sending me to a periodontist who does it with laser and it's only 5 minutes. Different people were giving their opinions that maybe it's better to formula feed because my milk could've been affecting him. I didn't listen and I'm glad I didn't!!!! He did his procedure today and he had both tongue and lip tie. The periodontist and his staff are amazing!!!!!! [See Directory for these Recommendations!] ~Karen S.~ Facebook, Miami.

From: Angela E Date: October 15, 2014 at 1:49:26 PM EDT My Reflux Journey   My reflux journey started quickly after my second baby was born.  Looking back on everything, I feel that there are many things that I could have done differently to avoid some of her suffering. Since my first daughter had mild reflux, and was only on axid for two short months, I thought that was the same road I was heading down. My lo’s [little one's] symptoms started at about a week old. She would spit up most of her feedings, cry when you would place her on her back, constant hiccups..etc.  All of the signs pointed to reflux! So, to the Dr. I went, and filled that same prescription as I did for my first. Things shortly after that started to get worse. Her diapers started to become filled with mucous, and her skin began to break out with eczema. Her little scalp had terrible cradle cap, that wouldn’t go away, and her sleeping was starting to decline. This all started around a week and a half of age. When I approached my midwives about what I was seeing and the diagnosis of “MSPI” they assured me that she was a little young to be seeing symptoms of MSP. They said it usually takes a little time for the proteins to build in the system, and for the symptoms to start. Since I was breastfeeding, I thought the only true test was to start eliminating foods. So the crazy elimination began!!! I started with dairy, and ended up eliminating soy, corn, eggs, wheat, fish and all of my prenatal vitamins. Each week that went by the symptoms seemed to be getting worse. I was going out of my mind trying to find out what the triggers were and why my baby girl was still reacting? By 3 months of age her sleep had regressed to night waking every  hour and a half. Her reflux seemed to PEAK and was no longer responding to the axid I had been giving her daily. Her entire system was in disarray, and I desperately was searching for the cause.  By 4 months old I had to switch her to a PPI, because the reflux was out of control. The GI’s were telling me she was one of the most severally allergic kids they’ve seen, and that  I needed to switch to formula. I was determined to find the missing piece here. I knew in my heart, I hadn’t yet found what she was reacting to.  The same day I decided to try the PPI, I investigated the ingredients in the axid. This was the med I thought was supposed to be helping her, and I had been giving it to her since day 3 of life. It all seemed to make sense now!!!  The axid was the only constant factor that I had yet to eliminate. It also started to make sense as to why there was mucus in her diaper on day 5 of life. Too soon for it to be a milk intolerance/ allergy like the GI’s had thought. And, the reason why NONE of my eliminations seemed to be working, or making much of a difference in her diapers.  It was on 3 days after switching from the axid to a PPI (beads dosed with apple sauce) that I noticed a change in her diapers. They went from an explosive mucus filled mess, to firm and “normal”. Her eczema started to clear and her cradle cap began to peel.  I knew I had FINALLY found the culprit to all of her issues. By this point her reflux was so out of control it took a good month and a half to get her comfortable again. By 6 months we were weaning her down to 5mg a day (from 30 at its worst) and she started sleeping 12 hours at night. I have to say, if it wasn’t for marci kids and Laura (admin on this page) I don’t think I would have ever switched to the PPI, or had a clue on dosing and how to find my baby relief. She spent hours on the phone with my talking me off the ledge of this nightmare we call REFLUX.  It is very scary to see your baby scream in pain around the clock. I now feel comfortable with how to dose the meds to actually help my baby, if this were to happen again. My GI was no help at all, and had her diagnosed with something she never even had.  Once it was time to move to a stronger med (axid wasn’t cutting it) and I didn’t have much guidance from my GI, I knew it had to put on the "mommy/dr hat" and start to research on my own. That’s when I found the marci kids facebook page and reached out for help. I followed the links in infantreflux.org and found all the answers I had been desperately searching for. I wanted to try a PPI with the LEAST amount of additives. I knew that compounding meds weren’t the absolute answer, due to them losing their potency after 10 days. WHO HAS TIME FOR THAT?!?! So, after researching on the site, I discovered that you were able to open up the small capsules of omeprazole and add the tiny little beads to apple sauce. That was my next battle. She was 4 months old at this point, with a very sensitive belly. Apple sauce was way too harsh and was causing more harm than good. I decided to make my own pear sauce, using organic pears. They were much gentler and everything seemed to be working well. Like, I mentioned above, I was determined to find the solution and was adamant I was NOT switching to formula. I knew that I had the power to make my milk as hypoallergenic as possible, and the MY milk was BEST for my baby!! The eliminations were hard, but let’s face it; EVERYONE should be eating that way. I mean, I was eating REAL food. THAT’S ALL!! What is so hard about that?!? REAL FOOD, without the crappy additives!! Yes, eating out wasn’t the easiest, BUT it was best for my baby! I got creative and found so many support groups on facebook for Mom’s with MSPI babies (remember I was dairy, soy, corn, wheat, nut, and fish FREE). I lived on fresh fruits, veggies, and meat! Once I was able to bring nuts back into my diet, I was able get protein in so many different ways!! The diet is MORE than doable, TRUST me! The most stressful part for me was, with each elimination, the mucus diapers would remain the same. IT wasn’t until I removed the culprit (axid) that her stools went back to normal! The corn syrup, that was in the axid, ended up being the culprit for my LO. Over the course of three months her diapers went from water, to mucous, to blood. It was terrible! Again, who would have ever thought the one thing that was supposed to be giving her relief, would be hurting her!? Back when I was starting all of this, I thought that it was Corn? Because nothing was working. It was after I cut the axid that I saw a true change. So I really have no idea what it was in the axid that caused the reaction. Maybe corn syrup? We still don't know. It was someThing in the axid. I eat everything now and started to, once I took her off axid. It was all that medicine. Had nothing to do with my diet. It took me 6 months to fully figure that out ! PLEASE take the time to SHARE YOUR STORY!!! Help others & PAY IT FORWARD! ~Angela~

Yes I'm happy to help, as you were so helpful to me. I used this site in place of my ridiculous doctor (GI spec) who refused to give meds at first and said a feeding tube was the only option. I knew about this site because we went through this with my son who is now three. Unfortunately I identified his issue too late and he has feeding aversion now. The TED was my last resort since I had followed all other advise with meds and I tried eliminating dairy and soy which didn't work. I followed TED strictly because there is so much hidden in our foods. I ate zucchini, rice, sweet potato, turkey, pears and potato. For seasoning I used evoo, salt and pepper only. If you pull up my previous posts I did post my daily menu which was pretty bland but I did it. The first thing was that her skin cleared up and she stopped being fussy. She became a happy baby, this was pretty fast, maybe after 10 days or so. My main issue was her screaming when trying to take the bottle and taking only small feedings. This persisted on the TED and I was about to give up when suddenly after 5 weeks she took the bottle peacefully. It was amazing. I thought it was a fluke but meal after meal she drank in peace. I then started adding in avocado with no problem. I went next to wheat which I realized within a day or two she started to get really fussy and the skin issues cam back, mainly cradle cap on her face. I then added in corn and had no issue. I actually tried to add in those more common allergens to identify them sooner instead of waiting. I then added in pork, then chicken, then beef, all no issue. I then started adding in lettuce and other veggies like carrots. Next I added fruits like banana and apples, again no issues with any of these things. I added in soy and she had immediate reaction. Then instead of me eating something like dairy I would give her a bottle of breast milk before TED and she would start feeding poorly again. Ultimately I realized it was wheat soy and milk that were the culprit. I thank you so much for providing help it truly was my most desperate time. Of course I have to thank God and prayer because if TED didn't work I really don't know if I could cope. It was so hard with her screaming in pain at every bottle. I would literally break into a sweat when I knew I had to feed her. The tricks like sleep eating and distraction didn't work like it had with my son. Also once she had to get an EKG because she would sweat when she ate and they actually realized that was due to her being in so much pain from reflux while trying to drink her bottle. So sad. I wish we knew more about how to prevent this stuff from happening. Anyway thanks much to you, you should be earning my doctors salary. Edited by ngarcia - 12 February 2014 at 11:51pm

From: Angela E Date: October 15, 2014 at 1:49:26 PM EDT My Reflux Journey   My reflux journey started quickly after my second baby was born.  Looking back on everything, I feel that there are many things that I could have done differently to avoid some of her suffering. Since my first daughter had mild reflux, and was only on axid for two short months, I thought that was the same road I was heading down. My lo’s [little one's] symptoms started at about a week old. She would spit up most of her feedings, cry when you would place her on her back, constant hiccups..etc.  All of the signs pointed to reflux! So, to the Dr. I went, and filled that same prescription as I did for my first. Things shortly after that started to get worse. Her diapers started to become filled with mucous, and her skin began to break out with eczema. Her little scalp had terrible cradle cap, that wouldn’t go away, and her sleeping was starting to decline. This all started around a week and a half of age. When I approached my midwives about what I was seeing and the diagnosis of “MSPI” they assured me that she was a little young to be seeing symptoms of MSPI. They said it usually takes a little time for the proteins to build in the system, and for the symptoms to start. Since I was breastfeeding, I thought the only true test was to start eliminating foods. So the crazy elimination began!!! I started with dairy, and ended up eliminating soy, corn, eggs, wheat, fish and all of my prenatal vitamins. Each week that went by the symptoms seemed to be getting worse. I was going out of my mind trying to find out what the triggers were and why my baby girl was still reacting? By 3 months of age her sleep had regressed to night waking every  hour and a half. Her reflux seemed to PEAK and was no longer responding to the axid I had been giving her daily. Her entire system was in disarray, and I desperately was searching for the cause. By 4 months old I had to switch her to a PPI, because the reflux was out of control. The GI’s were telling me she was one of the most severally allergic kids they’ve seen, and that  I needed to switch to formula. I was determined to find the missing piece here. I knew in my heart, I hadn’t yet found what she was reacting to. The same day I decided to try the PPI, I investigated the ingredients in the axid. This was the med I thought was supposed to be helping her, and I had been giving it to her since day 3 of life. It all seemed to make sense now!!!  The axid was the only constant factor that I had yet to eliminate. It also started to make sense as to why there was mucus in her diaper on day 5 of life. Too soon for it to be a milk intolerance/ allergy like the GI’s had thought. And, the reason why NONE of my eliminations seemed to be working, or making much of a difference in her diapers. It was on 3 days after switching from the axid to a PPI (beads dosed with apple sauce) that I noticed a change in her diapers. They went from an explosive mucus filled mess, to firm and “normal”. Her eczema started to clear and her cradle cap began to peel.  I knew I had FINALLY found the culprit to all of her issues. By this point her reflux was so out of control it took a good month and a half to get her comfortable again. By 6 months we were weaning her down to 5mg a day (from 30 at its worst) and she started sleeping 12 hours at night. I have to say, if it wasn’t for marci kids and Laura (admin on this page) I don’t think I would have ever switched to the PPI, or had a clue on dosing and how to find my baby relief. Laura spent hours on the phone with my talking me off the ledge of this nightmare we call REFLUX.  It is very scary to see your baby scream in pain around the clock. I now feel comfortable with how to dose the meds to actually help my baby, if this were to happen again. My GI was no help at all, and had her diagnosed with something she never even had. Once it was time to move to a stronger med (axid wasn’t cutting it) and I didn’t have much guidance from my GI, I knew it had to put on the "mommy/dr hat" and start to research on my own. That’s when I found the marci kids facebook page and reached out for help. I followed the links in infantreflux.org and found all the answers I had been desperately searching for. I wanted to try a PPI with the LEAST amount of additives. I knew that compounding meds weren’t the absolute answer, due to them losing their potency after 10 days. WHO HAS TIME FOR THAT?!?! So, after researching on the site, I discovered that you were able to open up the small capsules of omeprazole and add the tiny little beads to apple sauce. That was my next battle. She was 4 months old at this point, with a very sensitive belly. Apple sauce was way too harsh and was causing more harm than good. I decided to make my own pear sauce, using organic pears. They were much gentler and everything seemed to be working well. Like, I mentioned above, I was determined to find the solution and was adamant I was NOT switching to formula. I knew that I had the power to make my milk as hypoallergenic as possible, and the MY milk was BEST for my baby!! The eliminations were hard, but let’s face it; EVERYONE should be eating that way. I mean, I was eating REAL food. THAT’S ALL!! What is so hard about that?!? REAL FOOD, without the crappy additives!! Yes, eating out wasn’t the easiest, BUT it was best for my baby! I got creative and found so many support groups on facebook for Moms with MSPI babies (remember I was dairy, soy, corn, wheat, nut, and fish FREE). I lived on fresh fruits, veggies, and meat! Once I was able to bring nuts back into my diet, I was able get protein in so many different ways!! The diet is MORE than doable, TRUST me! The most stressful part for me was, with each elimination, the mucus diapers would remain the same. IT wasn’t until I removed the culprit (axid) that her stools went back to normal! The corn syrup, that was in the axid, ended up being the culprit for my LO. Over the course of three months her diapers went from water, to mucous, to blood. It was terrible! Again, who would have ever thought the one thing that was supposed to be giving her relief, would be hurting her!? Back when I was starting all of this, I thought that it was corn, because nothing was working. It was after I cut the axid, that I saw a true change. So I really have no idea what it was in the axid that caused the reaction in my baby. Maybe corn syrup? We still don't know. It was 'something' in the axid. I eat everything now and started to, once I took her off axid. It was all that medicine and had nothing to do with my diet. It took me 6 months to fully figure that out ! PLEASE take the time to SHARE YOUR STORY!!! Help others & PAY IT FORWARD! ~Angela~