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Discussion Starter · #1 ·
<p>Ok, I know I posted earlier.  We did get it fixed, but no one contacted us back till Monday.  So, for Fri, Sat, and Sun we only did one dose.  Let's say it was a long weekend especially Sunday night.</p>
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<p>But right now, he is starting display a lot of the things he did before...wont stay on his back at all for diaper changes.  Constantly needing to be held.  Refusing to nurse.  Not sleeping well at night -- and when he does get into a confortable position, it is stretched out, head flexed backwards.  Screaming in his carseat at times.  Starting to do a bit of the back arching...but not completely there...</p>
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<p>Also, he constantly sucks his fingers, has since this whole GERD thing started about 3 months of age.  Never before did he suck his fingers...</p>
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<p>Possible damage from 3 days on 1/2 normal dose or could the generic just not be working/controlling it as well...or could it be something else....</p>
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In my experience with my son I'd give it some time. It takes two weeks for the PPI's to reach full effectiveness. When we would try to wean Andrew's doses down and it failed (symptomatic) it seemed it took the full two weeks to get back to where we were. I think this is likely because the body over-produces acid in response to going off (or down in this case and our weaning cases) doses. So you're seeing more and it may take that full two weeks to be ok again.<br><br>
My son really did need three doses. We thought he was great on two for a long time. At 18 months we switched him to three and he did so much better. I think babies who have been in pain don't know what true relief is because pain is normal for them. So less pain is good even if it's not where it could be--they don't know the difference. So if you don't see 100% at two weeks full dose I'd consider dosing according to the guidelines for his age. Probably, though, you'll be back where you were in that time. I suspect you will. He may need just two.<br><br>
I know how horrible it is to see him hurting again. <img alt="greensad.gif" class="bbcode_smiley" src="http://files.mothering.com/images/smilies/greensad.gif"> I hope it starts improving soon and I think it will. It won't be day and night at two weeks so you'll see more and more improvement over the next week or at least that's how I remember it (this has been a long time...our babies do come off these!)
 

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Discussion Starter · #3 ·
<p>Thanks.  It is hard to see him hurting...but it is also hard to just do things because he just wants to be held for comfort.</p>
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<p>We saw a huge difference in the hospital w/in a day or two of him starting on the PPI, and once they moved it to 2x a day, it was even better.</p>
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<p>I just don't want a resurgence of the issues, as that time was a huge mess, including nasty allegations by our old pediatrician (who made the allegations after we fired them).</p>
 

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<p>We dealt with this in my daughter. It was severe, I know how hard it is to watch your baby scream and just want to make them feel better. We had her on a PPI for almost a year. We also did all the positioning, burping, everything you're supposed to do (great list of things to help at pollywogbaby.com). We did everything!</p>
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<p>My daughter developed some serious infections and vitamin/mineral deficiencies while on the PPI. Looking back, both my husband and I wish we had dealt with the root causes while she was on the PPI so that she would have been able to come off of it in a few weeks or a month after her esophagus had healed. But we didn't know about any of that, we didn't understand that reflux is actually a symptom of an underlying problem and the PPI is just a bandaid. They are not designed to be used long term. They are being used off-label in children.</p>
<p><a href="http://www.health.harvard.edu/fhg/updates/do-ppis-have-long-term-side-effects.shtml" target="_blank">http://www.health.harvard.edu/fhg/updates/do-ppis-have-long-term-side-effects.shtml</a></p>
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<p>So what is the root cause?</p>
<p>Sometimes it has to do with histamines in the gut. If so, histamine blockers will help (like Zantac). Reduce histamine foods.</p>
<p>Sometimes it has to do with liver stress. Give supplements to support liver function. This has been amazing for my daughter, as well as a homeopathic one we're now using (Magnesia Carbonica). It really does work, I swear. It will help him sleep again. Liver stress comes from eating allergenic foods, or having chronic, low level gut infections. Probiotics can really help as well as taking out casein/gluten and sugary/refined carby foods.</p>
<p>Sometimes caused by too little stomach acid. Can measure with beet pee test.</p>
<p>Sometimes caused by too much stomach acid. Usually from stress. Stress can be caused by allergies, detoxing, chronic low level infections, or adrenal issues.</p>
<p>Sometimes it has to do with mechanical problems with the shape or size or function of part of the GI tract. This is less common than the above.</p>
<p>Sometimes caused by more than one thing.</p>
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Discussion Starter · #5 ·
<p>We have been on a PPI since about 9/27.  While he was hospitalized for this, they ran a ton of tests..Upper GI with small bowel follow through.  We already know he has failed two swallow studies.</p>
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<p>I honestly think his reflux is the result of our Pediatrician not listening to us, and him projectile vomiting 24/7 for 6 days before they finally listened.  For 6 days I was constantly told it was "only a little spit up" and "there is not as much there as I think".  That the only reason my child is loosing weight "is because you are not producing enough milk".  This is with me telling them he yanks off in the middle of feeding, pukes all over me..I have it running down my breast from one side to the other, and a pool of it in my lap.</p>
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<p>I just went to one of the infant reflux websites, and man, the last week I can check off a good majority of the signs of GERD AGAIN.  Chronic ear infections, not sleeping well at night, never seeming satisfied with eating, not gaining weight...</p>
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<p>We had this under good control until he got his first ear infection in November.  We just got recovered from that, to two weeks later get the start of another one.  Since his hospitalization he has gained 4 1/2 - 5 lbs.  But we have stagnated out over the last 6-8 weeks to almost no weight gain.  And that was during the height of fighting off ear infections.  He was on antibiotics from Nov. 6 - Dec. 14, then again two weeks later he was back on them for 10 days.</p>
 

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<p>I am so sorry for everything he and you have been through. Reflux is so horrible. It really &&&^%$$# me off that doctors dismiss it so casually. We ran into the same thing. They treat you like you're crazy, overreacting, just a stressed out new mom. It is so callous and irresponsible.</p>
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<p>It does take some time on the PPI to heal. But it's not really ever going to get better unless you address the reasons why the reflux became such a huge problem in the first place. Ear infections are a sign of gut flora imbalance. The gut is a connected tube all the way from the mouth to the anus. Whatever flora are in the gut are going to be in the mouth, and from the mouth it is a short trip to the eustacean tube. I know because I had chronic ear infections as a kid and was on ABX a lot. I still get them mildly as an adult when I eat things I shouldn't and let the gut flora get out of balance again. Weight gain problems can be from malabsorption, which can result from gut flora imbalance too. The bad bacteria are toxic and inflammatory. In order to protect itself, the gut lines itself with mucous. This mucous protects the gut lining from damage but also prevents proper absorption of nutrients.</p>
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<p>The best thing for my daughter was putting her on the GAPS diet and giving her tons of probiotics. High dose probiotics will stop the ear infections. Antibiotics perpetuate the problem by promoting the growth of yeast and bad bacteria. Liver support is also really important because reflux causes a lot of stress and stress means lots of stress hormones are constantly being produced. This is part of the fight or flight response. The liver is a big player in metabolizing the stress hormones and when it is too overwhelmed to do it's job then stress hormones accumulate. It's a viscious cycle. High levels of stress hormones make it impossible to sleep (of course the pain of acidic reflux coming up is a major problem as well).</p>
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<p>The problem has many parts and all of these parts must be addressed at the same time for a cure. My daughter also has an infection of the stomach that caused inflammation of the pyloric valve and caused delayed emptying. So things that are apparently mechanical problems can actually be caused by infection. What is really helping is digestive enzymes (given away from probiotics, since they digest the probiotics) and probiotics, and eating small amounts at a time.</p>
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<p>PPIs lower the stomach acid and promote pathogen growth. Acidity is really important for proper digestion of food and for preventing pathogenic organisms from growing. They are necessary in the short term but in the long term they cause more problems than they solve.</p>
 

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It's really hard to not generalize what we've learned via our own kids to others. I myself struggle with that. So...that's my preface for what I'm going to say!<br><br>
In my son it was mostly structural but also delayed gastric emptying (due to metabolic things undx'd in him). Sometimes it's a root cause that isn't fixable. I think for a lot of young kids it's likely structural/a maturity issue.<br><br>
My son was also not gaining weight (actually failure to thrive and he spit up blood--severe pain--he was on the way end of severity). That lack of gain is a sign of severity. There are kids who spit up and people assume this is GERD but it's nothing like true GERD. I had another baby with spitting up and some symptoms (fussy, wanting to eat a lot, etc.). He grew out of it right on schedule (7ish months). If that was my experience with reflux I would have a different view point.<br><br>
There is a link between ear infections and reflux. Back when we were dealing with this kids with reflux had stomach contents in their ears when tubes were done. That may be the link or maybe they've found another since. We did a Tucker Sling so my son was elevated at night. It did seem to help him. Dosing three times a day did a world of good but that wasn't until he was 18 months. I regret that now. I thought he was dosed correctly and it was helping him to that point but he could have done better.<br><br>
You can do digestive enzymes and probiotics with the PPI's. I would not take a child off who is struggling. I've seen the effects of untreated reflux that was severe in my son. He was afraid to swallow for, well, I think he finally drank well close to four years old. Ugh. And then I do think the pain at such a young age had effects on him emotionally. And I don't think he's the size he would have been had he not been failure to thrive so long. I struggle personally with the assumption that if you just pick the correct root cause you can correct it and get your child off. I struggle with that because I believed it and tried so hard for my son and that wasn't in his best interest (weaning down, diet changes, chiro, supplements, etc--the focus i had on "getting rid" of it that never worked).
 

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Discussion Starter · #8 ·
<p>I have been struggling with this since the end of June.  It ended with us hospitalized for it, and the feeling it was my fault because I opted to nurse my child.  All I have ever heard with this child from medical professionals is that his issues, since he was 2 weeks old, were the result of me not have a good milk supply.  Even when he had Pyloric Stenosis, it was a milk supply issue.</p>
 

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<img alt="hug2.gif" class="bbcode_smiley" src="http://files.mothering.com/images/smilies/hug2.gif"> Doctors are so uninformed sometimes. <img alt="hug2.gif" class="bbcode_smiley" src="http://files.mothering.com/images/smilies/hug2.gif"><br><br>
You know it's not you, right? You know weight gain issues are common in babies with severe reflux? I know you know but it bears repeating. In my case it did affect my supply because my child with reflux didn't nurse well--but I'm not sure if that's because of poor suck (he had/has issues with muscle tone) or the lack of wanting to nurse because of pain. I suspect more the poor suck. His twin made up for that and then I pumped and it was all moot. Have you consulted with a lactation consultant? What they could do for you is weight pre and post nursing (when he's not in pain and nursing well, not now) and then you'll both know yourself and have proof if any doctor dares suggest it's a supply issue again, that the nursing has nothing to do with any issues. I hope, though, that in a week this will all be behind you.<br><br>
It's so hard to be in your position. I'm sorry. <img alt="hug.gif" class="bbcode_smiley" src="http://files.mothering.com/images/smilies/hug.gif"><br><br>
 

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<p>Sbgrace is right, it is so hard not to generalize our experiences onto others. I am really sorry that I came off so strongly. I would never advocate taking a kid off PPIs unless healing were taking place and it was possible. We had my daughter in a Tucker sling, too, until she was 18 mos. But she never had a structural issue like some others.</p>
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<p>One thing I really wish I had looked into sooner was homeopathy. There is a homeopathic remedy called Magnesia Carbonica and I bet it would help at least some. We use it now.</p>
 

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Discussion Starter · #11 ·
<p>Trust me I am well known with the LC's, because no one could figure out his problems.  They kept bringing in LC after LC after LC.</p>
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<p>I know it is not my milk that caused this...yes, when he did end up hospitalized, my supply had tanked, but it is back.  As a matter of fact, I cut back on my pumping, because I was feeding my freezer I was getting so much more than I needed to bottle feed him..and still getting the weight while nursing.  I have considered going back to my rigerious pumping scheduled of 24/7 every 1 1/2 hours...but I need sleep basically being a single parent of 4.  I had the admitting nurse telling me I would never be able to do this with my schedule and would have to switch him to formula.  I set my mind at that minute to prove her wrong.  I have done it so far.</p>
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<p>But, it is hard to keep positive at times, because my OLD Ped, for 4 months did nothing but beat into my head that this child's issues were all caused by my nursing and I was not making enough.  I really like our NEW Ped.  She has encouraged the nursing, has not called us crazy, nor pushed us to switch to formula, and wants to help get him off the supplimental feeds.  She has been there..and she is great with kids as well.</p>
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<p>He is sleeping right now, just nursed down.  When he wakes I will do a quick nurse, solid feed, suppliment another nursing, and hopefully he will go down for the night.  Oh, and his meds as well.</p>
 
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