If you or your child’s other caregiver have ever thought, “I think my child has reflux” then I recommend that you explore that thought a little. Do some research (your off to a good start by reading this article) and trust your instincts. I was the doubting Thomas; however, luckily my wife was all observation, instinct, and research.
During those sleepless nights of my son constantly waking and crying inconsolably she scoured the web. At first my son’s symptoms did not fit textbook GERD; he rarely vomited. But my wife was observing Lex closely and she detected something more and I think I even heard something too; and so she kept digging. Eventually she discovered that there was something called Silent Reflux which rarely resulted in visible vomiting. After she explained this to me I detected it happening to my son. Vomit came up and then he swallowed it. In fact, it made sense; neither my wife nor I have vomited more than 5 times in our entire lives. Maybe Lex inherited that super power.
Well, somewhere along the way, I think before I completely accepted that there might be something wrong I got my son an appointment with a specialist. Even though at the time we had a PPO and we did not require a referral to see a specialist this was not an easy task. Firstly our pediatrician consistently told us that it was normal or that we needed to change my wife’s diet. We gave up on that route and we started going down the list of Pediatric Gastroenterologists on our insurance and in our area. Some were booking 3-4 months out (or more) and others required a referral from a pediatrician.
Regardless we found one that seemed qualified and had availability. Dr. Fernando Navarro, MD, saw us rather promptly and he took us very seriously. He listened to our concerns and observations and sent us away feeling relieved and with lab test orders. Now if you have to go out and find your own doctor I highly recommend that you credit your pediatrician with the referral. This smoothed things for us during the initial visit and during their communications later.
The testing was a nightmare that I never want to relive. My son was feeling so bad with his reflux that he was eating ever moment there was space in his tummy. He was very used to feeding every 2 hours, but they wanted him fasting for 3 hours before they placed the pH probe in his esophagus. This requirement was a little difficult, but when we showed up for the probe placement they could not get it calibrated. They spent what was about 1.5 hours trying and it felt like a lifetime. We were furious and Lex was in pain and very upset with us for not giving him his bottle. He was less than 2 months old then. It literally broke my heart. Now I why parents act as they do when their children are in pain, such the characters in stories and films like “John Q.“.
Anyway, to get to the point the probe was placed. Lex sneezed a lot, but slept well enough in the strange hotel room. He was very pleased to get the probe out. He also took a barium swallow test with video x-ray. It was cool to watch and he made me proud sucking down all that barium solution so effortlessly!
Anyway, the tests came back shortly and the doctor saw us immediately. The tests confirmed that Lex had “severe GERD”. We never felt so validated, especially my wife and we did all but beat our pediatrician over the head with the report.
The doctor gave us a prescription for Zantac which worked well for Lex for about one month. This comes in an off-the-shelf prescription solution. The problem is that for some reason most kids’ reflux stops responding to it after a short while. My wife was again researching away and discovered all this was normal and that many parents were having luck with Prevacid. He got so bad he went on a hunger strike on a weekedn and landed us in the Emergency Room because of suspected dehydration. He turned out to be OK, but the visit was a major improvement because the doctor on hand switched Lex to Prevacid.
Lex is still on Prevacid Solutabs (more than 16 months later) but this is not the original prescribed form. The problem with this prescription was that is was for the little pellet packets. Luckily our insurance couldn’t process it right because my wife has read that administering it was a nightmare. The Pediatrician switched the prescription to a compound of Prevacid and this worked at first, but it was a big hassle because the compound was only viable for 2 weeks and our insurance required manual processing and rejected more than one submission per month.
My wife dug in again and discovered Prevacid Solutabs. We ran it by the pediatrician and they checked with a specialist who blessed it and said that these were quite common. Back then somewhere between 3 and 4 months Lex was on half a 15 mg tablet twice per day. The Prevacid Solutabs are artificially sweetened and flavored (strawberry) and Lex took them willingly. When we was younger we had to hold them in his cheek until they dissolved, but now he just takes it right on his tongue. Lex is on 15mg twice a day now, but that is not two 15 mg Prevacid Solutabs. Doing that was two expensive and the insurance was a major pain. Finally we switched to a 90-day supply of 30mg Prevacid Solutabs, half a tablet twice a day.
I know that cutting pills is not an exact science, but precision is not necessary in this. More important is the timing. 45 minutes after food or drink and no food or drink for 30 minutes after the dosage. Stick to this and you will see a happier child.
Now Prevacid was not the only medication that Lex started back then. He was on some weird colic medication that we eventually stopped because results were inconclusive. But Dr. Navarro recommended something his colleague was testing as a treatment for Colic, probiotics. Specifically he recommended “Lactobacillus GG” which is commonly sold by the “Culturelle” brand. We started giving this to Lex more than a year ago and we still do. We don’t give him the the capsule and hope he doesn’t choke, but rather his first bottle (and now sippy cup of “juice”) is spiked with a capsules worth or about 10 billion bacteria cells. Seriously this stuff is worth a try. It is “the most clinically researched strain [of probiotic] and proven to improve digestive health”. We took Lex off of it, well it sort of happened, and then he ended up with all kinds of digestive problems. Was Culturelle’s Lactobacillus GG keeping his healthy? Who knows, but it was the only thing we changed. So he is back on it indefinitely now.
Lex also started taking “Bethanechol” at about 3 or 4 months of age. This is a simple compound (necessary for administration to a young child). CVS and Rite Aid have agreed to make it for us after a little discussion (and they don’t usually do compounds). The drug is a motility agent that helps get food out of the stomach sooner. We have stopped and restarted Bethanechol many times. Presently Lex is still on 1.5 ml twice per day. The concentration is 1mg per 1 ml. Anyway, those are his medications. They keep him from pain and as a result happier than he would be without them. They require some timing (Bethanechol can cause nausea so not right before or after food), but once we worked this into our routines there was not too much disruption.
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Thanks so much for you blog on this! Both of my sons had silent reflux, one did the barium swallow and they were both on the solutabs. A baby I know is going through similar symptoms and I just sent the family a link to your article. You did a great job educating others on this disease. So glad that you solved Lex’s problem and that he’s doing better!
Thank you Laura! I really appreciate that my efforts have helped some one. We struggled so much in the beginning with this, so I wanted to be sure to help someone else overcome at least part of the struggle.
BTW, I should add for those who don’t know… Prevacid’s manufacturer TAP has a program that provides rebates on prescription refills of Prevacid (up to $25 per refill). The program is called the “Instant Savings Program” and it either works with a discount card or a mail-in rebate for each refill. For more info I think you can call 1-800-458-2300.
Thank you for this! You just made me feel so much better. I gave birth to a 34 week baby who seems to be in pain when he eats, but doctor’s have made me feel like an idiot! I keep saying something’s not right, but they keep saying “He’s not vomiting and he’s gaining weight.” I feel so much better after reading this, I know that he’s in pain, he arches his back when he eats, he’s now refusing to eat after a few sips of formula, and zantac and prilosec helped a little, he’s still not eating well. We just got switched to prevacid yesterday so I hope this makes him feel better. I’ve also put him on probiotics because he went 6 days w/o a bowel movement, since he’s on the probiotics he’s an every other day bowel movement. Anyway, thank you for writing this. I had no idea about silent reflux, but I really think my son has it!
I am so glad you found this article useful. It really does make my family’s struggles feel a little lighter to know our experience has helped someone else.
Until we had the results of the GI Probe, no doctor really paid our concerns much attention. Lex was 20 pounds at 4 months of age, because he sucked down formula to feel better. Once we had the results and flashed them to any doctor, that doctor really paid close attention. If possible go for the test and then they will believe your instincts and observations.
Lex is now 2.7 years old and he is on Zegerid, only because our insurance dropped Previcid coverage. We all really miss those wonderful Prevacid Solutabs. The Zegerid does the job, but requires much more effort, includes baking soda, and tastes terrible! In the way of an update, Lex still takes Culterelle probiotic daily. I really shoudl find a way to buy it in bulk. Come on Costco, help us out.
Thank you so much for this information. My daughter started arching in pain when she was first born. We formula fed my daughter as I was unable to breastfeed. The milk based formula irritated her so much that she was arching (almost doing back bends). I took her to the pediatrician and they told me it was colic. I took her to a specialist and she was diagnosed with GERD. We tried Zantac too and it really did not work. We were then switched to Prevacid Solutabs and have been on them for quite a while. My daughter still burps a lot, has gas, and gags. I was wondering if you just started giving Lex Culturelle or did your doctor tell you the dosage. I would like to try probiotics. Our gastroenterologist has my daughter on a dairy free soy free diet and honestly I do not believe allergy is the problem. She is still burping and passing lots of gas. Thank you for all of your info. It is nice to know that we are no the only ones that have been going through this.
JUST A QUICK UPDATE
Lex is now 3 years and 3 months old and daily, well each morning, he has a packet of Zegerid 40 mg and the contents of a capsule of Culturelle. He is a happy boy with almost no episodes and we allow him fatty dairy products (said to be easiest on the tummy) with half of a Lactaid dissolvable tablet. By the way, the switch to Zegerid was driven by our insurance, United Healthcare / Medco.
Hi Jodi, thanks for sharing. Actually, the doctor that truly listened to us and got Lex’s severe GERD diagnosed recommended we try probiotics immediately, even before the GERD test and diagnosis. His colleague had been doing various tests with Probiotics, specifically Culturelle’s strains, to treat cholic in babies. We started with some Probiotics from Whole Foods, but we got our hands on Culturelle soon and have never stopped taking them.
I appreciate sharing of such a detailed info. I fully agree with James. Trust your instincts but its so unfortunate that Doctor’s still do not believe parents when they complain of their kids food problems !
I had even worse experience . My son is 4 yrs now and we detected only now that he has Grade II GERD! Poor boy , he is already underweight and suffered so much!
When he was young till a yr we never doubted that he vomits because of any problems , but we thought that the nanny is overfeeding him and so we adviced her instead.
The next yr too he showed no interest in eating by himself and was throwing up immediately after food but again not every day/time . My ped said, I am still making him eat baby like, and force feeding and expecting more than he can eat. Well I kept wondering , then when it still continued , she changed his diet plan , it did help to a good extent and we thought he is on track now.
Oh but poor thing, he still was a slow and picky eater leaving me frustrated as to why nothing seems to interest him except things like ice cream or sweet corns or chocolates . Also he fell ill every 3 weeks last yr , and even had a episode of Asthma. We were wondering what was the matter, but our doctor maintained, it happens since this is his first yr to school and day care and we need to work on his immunity.
Well finally it became worse , he learned now that he has to vomit in wash basin and which he did silently without even letting us know! He learnt it in his daycare..
One day, his grandfather suggested us to refer a ped. gastro., I searched internet about the issue and discovered he was showing perfect symptoms of GERD !
I had never heard of this disease before.
When we finally met the gastro specialist it was confirmed and the dietician ended in blaming us for ignoring the problem for so long!!
I’m wondering … should’nt the doctors do a more comprehensive check up of the child than just symptomatic treatments of the fever / cough? I got to know that he was falling ill frequently because the food gets aspirated in lungs causing infections, and this was the same reason why he had wheezing / ashtma.
Hope that this article helps others in detecting issuses with their kids earlier than we could !