Testimonials

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~

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