Posted By Posting
May 11, 2013
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Still here
I just didn't want anyone looking for help to see the date of the last post and think no one will respond if they post. Or maybe someone found a cure for GERD and forgot to tell me!? :)

Seriously, though, if you are lurking and struggling with a little one with GERD, please don't hesitate to post. The advice and support I got on this forum when my son was a baby was invaluable. He's 6 now, and still has GERD, but I will never forget how it felt when he was so little and I didn't have a clue what to do for him...

May 22, 2013
babsil037
my little guy
Hi there - I just joined this as my 3 and a half month old was diagnosed with GERD about 1 month ago. I am basically on the verge of tears every second. He eats ok I would say (this is my 2nd baby so I try not to compare too much). I can usually get about 3 oz in him at a feeding and about 24 oz a day which I know is great. He is gaining weight and generally happy, but his cough is absolutely horrendous! He sounds like an 80 year old smoker. It wakes him constantly at night specifically from 1am-6am. I just don't know what else I can do for him. He is on Prevacid 15 mg daily, he sleeps in a Tucker sling, I almost never have him lying on his back but the cough and the congestion that comes with the cough bring me to tears. I guess I am wondering if there is something more I should be looking into with him. The doctors keep telling me that the cough is normal with reflux. I just switched him to soy formula but that hasn't helped. Any help would be much appreciated
May 23, 2013
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
((HUGS)) I spent much of the first three years of my son's life on the verge of tears. It sounds like, in addition to your concern about your little one's well being, you are also not getting much sleep with the coughing -- and I know how excruciating sleep deprivation can be... Hang in there. You are not alone in this, ever. So many of us have been through, or are going through, the same things and the purpose of this place is to be here for each other. Has he been seen by a pediatric pulmonologist? Coughing is NOT "normal" with reflux, though it isn't uncommon. If the cough sounds thick and there is congestion, I would be concerned about aspiration, which occurs when refluxed material is inhaled into the lungs. Has anyone spoken to you about that? Has your little one had any diagnostic testing, or is the reflux diagnosis based on observation and response to medication?
May 23, 2013
babsil037
He has been in the hospital 3 times, mainly due to low oxygen. He had the barium swallow and no aspiration was noted. He also had an endoscopy that noted inflammation which led to the reflux diagnosis (after 4 days in the hospital). His lungs have been clear every time we go to the doctor (which is sooooo often!). He is also on Budesinine for asthma related symptoms. I have an appointment with an allergist to see if he is allergic to anything. I am jsut wondering if any other parents out there had a child with these similar sypmtoms of reflux.
May 25, 2013
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
When you say he's been in the hospital for low oxygen, how did that come to be known -- did he turn blue, have low sats at a doctor's visit, etc.? Was his birth problematic? When did his health issues first surface?

If his lungs are routinely clear, but his cough sounds congested, it could be that the reflux and inflammation in his upper airway are causing a lot of congestion, which then has time to settle in his throat and chest during the early hours of sleep -- thus the coughing in the 1-6am range. While Prevacid eliminates acid in the reflux, it does not prevent reflux -- and reflux, acidic or not, can cause inflammation and congestion. At his age, the passages in the upper airway are so small that even a very little bit of congestion can cause real challenges and hideous sounds.

My son was chronically congested, had truly horrendous sleep issues including apnea and frequent arousals, and got so many upper respiratory infections that I lost count after 30 in his first 18 months. In his case, the acidity of his reflux wasn't such a problem as the reflux itself, which caused a lot of congestion and was coupled with sensory processing issues that created some extreme reactions on his part to being congested and having difficulty breathing. It ultimately became a big, complicated cycle, which took a long time to find a way to break into and provide some relief.

I hate to see little one's go through invasive testing, but at some point, you may find it worthwhile to have a pH Impedance Probe done, to establish the severity of the reflux and help determine the acidity levels and its relationship to the coughing. If you are open to it, and it is available in your area, cranio-sacral therapy is gaining recognition as an alternative treatment with significant success in some cases, and may be worth considering. We had quite a bit of success (no cures, but definite improvements) with both cranio-sacral and Chinese Medicine. You might also try using eucalyptus, bay or camphor oil in a humidifier, or applied straight onto a cloth near his sleeping surface (just hanging nearby is adequate), as they all can be of help in reducing congestion.

Hang in there. It sometimes takes awhile before you find the pieces of the puzzle and the best combinations of treatments -- and even then, sometimes, things change as soon as you think you have it figured out -- but even when it doesn't all go away, it really does get better in many ways as a child's systems grow and mature.

May 28, 2013
babsil037
His pulse-ox levels were in the mid 70's which led to the hospital admissions. We took him to the ER each time because of high fevers. I knwo the body does a huge acid dump at around 2am which leads to his reflux, coughing, and then congestion. His birth was normal and we started seeing issues around 4 weeks but didn't get the AR diagnosis until 8 weeks. I am mainly concerned about 2 things: 1) Sensory development...how will I know if he has sensory issues and what should I do to help curb them as he gets older and 2) at what point should I be worried about more serious problems such as Cystic Fibrosis or CF Related disease?
May 29, 2013
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
For information regarding sensory development and sensory processing issues, I recommend two books and two websites. The first book is called "What's Going On In There? How the Brain and Mind Develop in the First Five Years of Life" by Lise Eliot. She is a neurologist and a mother and the book is one of the best I have ever seen when it comes to describing the details of neurological development and what can interfere with its typical path. The other book is "The Out of Sync Child" by Karol Stock Kranowitz, and it is an excellent resource for understanding the specific details of Sensory Processing Disorder (what it is, how it is diagnosed, and how to treat it). Of the two, the first book is probably much more applicable to where you are now with your little one. I am very glad that you are already thinking along those lines, as going through as much as your little one has already makes interference with typical neurological development more likely. That said, even if sensory issues show up, they are absolutely treatable and the earlier you intervene, the better (and earlier) the outcome.

The website are out-of-sync-child.com and sensory-processing-disorder.com Explore both sites for additional information and support. I didn't become acquainted with the nature of SPD until my son was 3 years old, by which time he had some pretty extreme sensory sensitivities. He is 6 now, and while I can still tell that he responds differently than most kids to certain sensory situations, he has successfully shed most of them.

As far as CF goes, my understanding is that most physicians look for failure to thrive as a major marker, so if you are concerned, my advice is to educate yourself as much as possible (without freaking yourself out -- often a delicate balance) so that you can advocate for investigating it if you feel it is warranted and his pediatrician does not.

Was there ever any clear cause of the high fevers? Is he on any kind of 02 monitor or apnea monitor now?

May 29, 2013
babsil037
His fevers were most likely due to respiratory infections but he isn't on an O2 monitor. He has a check-up next week but I think I am going to start trying acupuncture on him as well as dosing him 15 mg Prevacid in am and 7.5 mg in the evening since his owrst hours are from 1-6 am. Thanks for all your help!! It truly has been so great to know we are not alone in this.
Jun 28, 2013
pleasegoawayreflux
9 Month Old Still Wakes 3X/Night & Not Sitting Up Yet
Hi, I really need some guidance on two major issues. But first, here's the quick background on my little refluxer daughter, Avery...We discovered her issue 2 months too late after I was practically becoming nearly suicidal because she was waking EVERY HOUR ON THE HOUR at night. I was going crazy and no one would listen to me and told me it was normal for newborns. I knew better and after typing in her symptoms, arched back, signs of discomfort, etc., for two months I finally stumbled across an article on “silent reflux” and I believe this article saved my life. I called the Ped and told her what I thought it was and she was put on Prevacid and my daughter slept for the first time in months for 6 hours straight. I cried for two days after that, beating myself up for not figuring it out sooner. So that’s the long story short. My first question is: My daughter is 9 months old and since she was 6 months, I’ve been earnestly trying to get her to sit on her own and she still cannot remotely sit unassisted. She goes to a PT once a week and they do exercises. When you do get her to sit, somewhat, for a few minutes, she will burp or spit up within a minute or two. Anyone else have a refluxer that was physically delayed and specifically sitting-delayed and did your refluxer spit up almost immediately when they were in sitting position? My second question is: I escalated my daughter’s issue to a pediatric gastroenterologist (she still wakes like 2-3 times a night which is better than every hour but I am exhausted!) who was a total disappointment, barely examined her and stated, “She has reflux, yes, but she has to learn to live with it. She is on the best medication and a good dose. She is not a candidate for surgery.” How can I sleep train a refluxer? Sometimes when she wakes I can tell it’s behavioral. I am desperate for sleep and my husband is useless b/c he sleeps as if drunk and would never hear her and my family lives far.
Jul 04, 2013
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
I want to first express my hope that you have stopped kicking yourself for anything to do with not figuring out what was going with your daughter as quickly as you wish you had. We all do the best we can with the knowledge and experience we have, and it's extremely rare that that is enough to figure it all out as quickly as we would like. It took me over four years to tie together all the issues that my son had going on, and it is still not entirely clear how they interact and affect each other, because at the same time I am figuring out, he is growing and evolving, as children do, and so things are constantly changing. One of the best lessons I've learned about parenting is that, once you've got it all figured out, it will change, so don't get too attached to having it all figured out!

As for you questions -- the first, regarding sitting up: Yes, there can be a fairly direct correlation between developmental delays and reflux, though it isn't always clear which direction the correlation goes, or whether it is just circular. One perspective is that a baby who experiences pain or discomfort with reflux when they are in certain positions will avoid those positions, or the pain/discomfort occupy so much neurological activity that the neural pathways that might be used for strengthening the skills in that position are overwhelmed and thus less available. Another perspective is that low muscle tone is a cause of reflux, and so a child who has reflux may concurrently have low muscle tone (which makes tasks like sitting up unassisted hard to do). Alternatively, it is possible to look at it as a circular situation in which avoidance leads to decreased muscle tone and decreased muscle tone leads to reflux which leads to avoidance, and on it goes with no clear beginning or end. In my experience, it is essential, regardless of how you view it, to address BOTH the reflux AND the low muscle tone simultaneously, which it sounds like you are doing. It is possible that her inability to sit unassisted is not directly related to reflux, in which case continued PT will likely be needed, but you can bet that if she is spitting up every time she sits up, no amount of PT is going to make sitting up something she's going to be terribly motivated to do. (FYI, the sitting position is notoriously hard on refluxers, because it puts pressure on the LES valve as the abdominal muscles contract and the torso bends, and since, by definition, a baby with GERD has a weak or poorly functioning LES valve, sitting up frequently leads to spitting up.) Has the PT already discussed with you the signs of Sensory Processing Disorder? SPD is also fairly common among refluxers and can lead to some other developmental delays.

I want to add, in the vein of developmental delays, that it is helpful to remember that they are called developmental delays because they are DELAYS -- children who have delays do eventually achieve success at whatever the skill is, it just takes longer than it does for the statistically average child. As a parent, it can be very hard to see other children of the same age doing things our own children can't, but I think it is important to distinguish between an inability to do something due to prolonged physical incapacity, and the inability to do something because the body and or brain need more time and more support to do it. That applies to all sorts of delays -- if it's a delay, it just means it is going to take more time than previously expected.

Regarding sleep training, my personal opinion is that one should never attempt to do any sleep training with a child who has reflux symptoms. Even Dr. Ferber, one of the most well known advocates of sleep training, states explicitly that he does not recommend sleep training for children with physical issues which may be causing sleep disruptions. And I assure you that reflux can cause SERIOUS sleep disruption, and it doesn't have to be acidic reflux to do so -- even non-acidic reflux can wreak havoc on sleep. I found it very helpful to understand some things about the nature of sleep and sleep cycles when trying to understand my son's sleep troubles -- which caused him to wake every 10-40 minutes for over a year when he was an infant, and he continued to wake frequently, sleep poorly and for very short overall lengths until quite recently (he's 6 years old).

I'd be happy to provide you with information in greater depth, but the most basic things that I think you ought to know are that 1) everyone experiences transitions between sleep cycles which result in arousals, periods when we are in a delicate balance between asleep and awake. During these times, which for infants typically occur every 40-60 minutes, we are highly sensitive to being awakened by sensory input -- noise, discomfort, etc. So naturally as child who is refluxing in the vicinity of an arousal is likely to wake up completely, rather than progress on to the next sleep cycle, and since they may be feeling in pain, in discomfort or afraid as a result of experiencing the reflux, it would understandably be a lot to ask for an infant to comfort themselves and get themselves back to sleep. Most adults have a hard time doing so under those conditions, so it's hard to imagine expecting a child to do so. And 2) During REM (dream) stages, our sleep more likely to be disturbed by sensory input. In adults most REM sleep occurs in the last few hours of sleep. In newborns, it occurs almost immediately upon falling asleep, and then somewhat randomly through the rest of their sleep hours. As a child ages, they tend to move toward a more patterned sleep progression, moving toward more REM in the later periods of sleep, but exactly when that happens remains somewhat individualized and no one really knows how physical sleep problems affect that progress. In other words, there are plenty of opportunities for reflux to cause sleep disruptions in infants and toddlers, and one must, I believe, take that into consideration when working with sleep issues and the child with GERD.

Also, because I wish I had known long before I actually did, I think it is critical to understand that reflux can have a very direct relationship to much more serious sleep issues than just frequent waking. Reflux can, for example, cause both Obstructive and Central Sleep Apnea. It's not exactly common, but it is common enough that I find it appalling that every parent of a refluxer is not given clear guidance by physicians about how to identify symptoms of sleep apnea in their children -- especially when parents come to them with complaints about their child's sleep. Frequent night wakings, snoring, loud breathing, mouth breathing, night sweats, unusually restless or unusually still sleep, and strange body positioning in sleep are common nighttime symptoms of sleep apnea in children, and developmental delays, hyperactivity, lethargy, and/or sensory processing issues are common daytime symptoms (among others).

So, with all that arguing against sleep training, what is an exhausted parent to do? First off, I will say, having been there, that not responding to your crying baby because you are out of your mind with exhaustion and think you may cause harm if you do respond is both very difficult to do and extremely wise. Prior to having the child I had, I didn't understand how parents could fly into a rage at an infant. After a year as the only person getting up with an extremely frequently waking child, I understood completely. Sleep deprivation can literally make you crazy. It is used as a form of torture in times of war, and it is very effective, because having the illusion of getting to drift off to sleep only to be awakened just as you do, every single time, truly is torturous. So, if you reach that point, don't berate yourself for not taking care of your child -- the best care you can give in those moments is the space to regain your senses.

Short of reaching one's breaking point, getting the reflux under control is obviously the first order of business, and also a lot easier said than done. Sometimes, in fact, it isn't even possible (as was the case with my son, who wasn't a candidate for surgery but also never stopped refluxing on any treatment we tried). In such a case, changing your perspective on priorities and lifestyle is critical in my opinion. You can make sleep a priority by acknowledging that it is a basic human need, like oxygen, and protecting it as such. Try to get anyone you trust to watch the baby while you lay down during non-nighttime hours -- even if you don't sleep, resting goes a long way toward keeping sanity intact. Ask for help with daily tasks if it will give you time to either rest or do things for yourself that rejuvenate you. It can be hard to explain, and even hard to notice, just how much energy is required to be "on duty" with a child all the time -- even when you appear to not be doing much, it is like being on call every minute of the day and night, and most of us direct an enormous amount of energy toward the care of our children even when we are not directly interacting with them. It is draining, and the energy stores need to be refueled. Perhaps you can ask your husband to take at least one night, now and then, when he intentionally stays awake (if he isn't able to wake up when she does) for a length of time to allow you to sleep without interruption, or at least get up with the baby in the morning if you feel like you would be able to sleep in. If he can't, or won't, or can only do infrequently, try to to think of anyone else you know who could (family, friends, babysitter, etc). I had no one for most of the time my son was sleeping least, and in those desperate moments that inevitably arose, what got me through was visualizing a woman I knew, whose baby had died, sitting in a corner of the room -- I imagined her there, reminding me that she would give absolutely anything to just hold her baby again, even for moment, and doing so helped to put it all in perspective for me and give me the strength to respond even when I thought I couldn't keep going.

It's mistake that many of the parents here have compared the experience of having a child with reflux with the experience of being on a roller coaster -- the ups and downs and unexpected twists and turns are many. Once you realize that you are on a roller coaster, however, it can become easier to move with the changes, adjust and see what lies ahead, rather than resisting, feeling overwhelmed and blindsided by each shift of circumstances.

Check with your
doctor first!