Posted By Posting
Aug 28, 2011
hopefulmama
Suggestions welcomed - silent reflux (Long post!)
I am new to this site - first time mom - and hopeful that others' experience will help in knowing what the next step may be to help our daughter cope with her reflux. She was born via c-section May 14, and lost the typical 10% weight, but stopped gaining weight after that. At 10 days old we were taken via ambulance to the ER after a reflux episode left her unresponsive. She was then diagnosed with reflux, but it was hard for us to catch as we didn't know what symptoms to look for, and her reflux was more silent overall vs projectile vomiting. I am exclusively BF and have attempted cutting all types of intolerance culprits out of my system - we even had her on nutramigen for a period of time to no change. She is now on Omeprazole twice daily. We tried Axid, but her spit ups were still chunky & acidic. We tried carafate, but that causes her to throw up more. We've seen a GI specialist, countless trips to the DR, countless questions asked and we have major concerns about the amount of sleep she gets each day. From my research about reflux babies, it sounds as if most dont sleep. We've swaddled, elevated her crib, run a white noise machine etc etc but nothing is helping. She won't even sleep more than 40 minutes in our arms. She grunts constantly in her cat naps, wakes frequently all night (the only sleep she gets I imagine out of sheer exhaustion) only to start the dance all over every morning. There is a lot of coughing, clearing her throat, hiccuping & spitting up when burped, even on the Omeprazole. The Dr. tells us "She's gaining weight - so it's under control." My heart tells me otherwise. It's heartwrenching to watch her struggle to sleep every day and cry from fatigue. Yet nothing we've done has made any progress. We've read "Happiest Baby on the Block" - she doesnt like sleeping on her stomach, hates car rides, doesn't sleep in the swing...we do everything possible to attempt to give her the gift of sleep. To no avail. Has anyone else had any similarities to this and found something helpful that perhaps we haven't tried? I am so grateful for any suggestions/insight and just knowing we're not alone in the reflux battle. It seems like it's the hardest thing in the world watching your LO suffer - and while i understand it could be so much worse, watching my little sweetie cry in pain and fatigue daily still makes my heart sad 3.5 months later. Many, many thanks for any suggestions!!
Aug 29, 2011
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.
Many ((HUGS)) to you -- the sleepless reflux baby syndrome is so hard. Your daughter sounds SO much like my son -- life threatening event due to reflux, mostly silent reflux, horrendous sleep. I spent almost 4 years trying to figure out all the pieces to his puzzle, and there were, it turned out, a lot of them. I share the most significant ones with you not to suggest that your LO has any in common, but to give you some things to consider and learn more about, to determine if any seem to apply.

One of the first things we discovered to be going on with my son in addition to the reflux, was sleep apnea, which we believed was caused by his reflux. This can happen as either an obstruction (Obstructive Sleep Apnea), a neurological reaction to a compromised airway (Central Sleep Apnea), or both. It was good and important for us to know that it was happening, but the diagnosis didn't provide much help because the obvious solution was to control the reflux and we weren't having much success doing that.

One of the things that was a periodic problem for Lorenzo was aspirating on reflux, which, after much research, I came to understand can be symptomatic of an underlying neurological issue, though it took me a lot longer to figure out what that issue might be. It was that quest to understand a neurological link that eventually led me to investigate Sensory Processing Disorder (SPD, sometimes also called Sensory Integration Disorder, or SID). Here is a link to a symptom checklist for infants that you might find useful

www.sensory-processing-disorder.com go to "Helping Baby Sleep" and then scroll down to Infant/Toddler Symptom Checklist and click.

As soon as he was diagnosed and began Occupational Therapy for SPD, we saw a significant improvement in ALL of his symptoms, including the reflux (this was when he was 3). What we realized was that, for him, the sensation of reflux (even non-acidic reflux) was so overwhelming to him that his body would respond as though he were under attack -- which allows for three options: fight, flight or freeze. He would freeze, but his parasympathetic nervous system was triggered almost constantly, which led to a host of puzzling symptoms, including extremely frequent awakenings (often every 10-40 minutes) and rapid heart rates.

But at about the same time we saw those improvements, he started showing signs of extreme anxiety, which brought on the reflux again, as well as some regression with the SPD. Then, one of the moms from an SPD forum gave me some information about Post Traumatic Stress in children, and the more I understood about it, the more I understood the likelihood that PTSD was at play. There is an outstanding book, called "Trauma Through A Child's Eyes" by Peter Levine and Maggie Kline which is an incredible resource, IMO, for any parent and a must have for any parent whose child has had an Apparent Life Threatening Event.

For Lorenzo, identifying and treating the reflux, the SPD and the PTSD has completely changed the course of his life. All three were so closely interwoven that it was only when we identified and provided support for all three that we saw truly dramatic improvement. That said, all three are still a part of his life, though the symptoms of all are vastly diminished. Each is now something of a barometer of his well being -- as soon as symptoms of any one of them become apparent, I know that he is experiencing more stress than he can cope with. I can't always reduce or eliminate the stress, but I now have a toolbox full of techniques to help support him through stressful periods.

I hope I haven't overwhelmed you with our story and information, but whenever I hear someone describe a child whose symptoms and responses are not easily explained, I think of the years of worry, confusion, frustration and research we went through and hope that our story, or some part of it, may help someone else find answers sooner....

Aug 29, 2011
hopefulmama
Thank you so much! It's definitely worth looking into, and I appreciate you sharing your story. Sending you hugs as well! Your kindness is so appreciated!
Check with your
doctor first!