My son was born in May 2014. He was two months premature and was fed tiny amounts through a tube up his nose for the first two weeks. He had pretty bad apnea, too.
Transitioning him to a bottle was difficult and that’s when the severe silent reflux was initially diagnosed. So the neonatal doctor put him on a very small amount of Zantac. That didn’t seem to help much, so he was moved on to First Omeprazole (Prilosec), which did help, but, as he moved on to bottle feeding, there was still a problem with him not really understanding how to feed.
So, along with the NICU nurses, we got him to a point where he would take an ounce or two; enough to gain weight and, at just over a month old, he was released with an apnea monitor. Unfortunately, he was home for a week when he developed an incarcerated inguinal hernia, so it was a mad dash to a Children’s Hospital down state for emergency surgery.
He was so tiny and fragile. The operation was 4 hours long and the recovery in hospital took 10 days. During that recovery, the hospital changed his reflux medication from Omeprazole to Protonix. ADVICE: If you are in a situation where your baby has to go in to hospital for anything, DO NOT let them to change the reflux medication! His reflux went crazy and was out of control. His operation meant an inch of intestine had to be removed and that in turn meant he could only feed tiny amounts (1 teaspoon) to bring the intestines back slowly. That was hard enough, but the medication change made a slow and painful recovery much worse. He was starving hungry and when he was fed this tiny amount, he was in unnecessary pain.
Following the drama, he was sent home, he was stable and we continued on with the reflux. Managing it was becoming a big issue and his pediatrician added Zantac to the Omeprazole. As he grew, the reflux was back and his pediatrician kept slowly increasing the dosage of both medications. After reading and researching, I found out that our pharmacy was compounding by crushing omeprazole beads and adding them to a buffer that was less effective. And, what was worse, we realized that he was on a dose much lower than he should have been.
With the help of the Facebook Group ‘Infant Reflux: Support for Gerdlings’ and here, Infantreflux.org, we made his Omeprazole ourselves. Unfortunately, that was not so successful (we found out the dose was too low). We then pushed for a higher dose from the doctor, who caved and sent us to a GI doctor. However, in the meantime, we moved and changed pharmacies. The new pharmacy did not compound from beads but instead used the kit from the company that makes Omeprazole. He was moved on to First Omeprazole (the kit) and that made such a huge difference! This kit does not help all babies with reflux – I have seen many reports of it not helping – but it helped us immensely, along with the Zantac. We were also advised to thicken his feeds with rice or oats. I was very reluctant to do this at first, but I was proved wrong. So the magic formula for us was: FIRST Omperazole, Zantac and thickening feeds. After more research I also added Klaire Labs Infant Probiotic Powder and Klaire Labs Galactomune prebiotic powder to his milk.
As a mom who has been through the awful months of Severe Silent Reflux, I would recommend the following:
Research, research, research. Don’t just take what your pediatrician says as gospel. They aren’t always right. Listen to your gut instinct, but don’t read about other medical issues and decide that’s the problem instead of, or as well as reflux. Remember that Dr. Google is a quack. Get facts, but keep it real. See a GI doctor or Nurse who understands that the dose of medication given by pediatricians is often TOO LOW. Our GI Nurse immediately told me that babies should be on adult doses. I knew then that we were seeing the right person. If you don’t like your Pediatrician or GI, or aren’t happy with them, or feel they don’t take you seriously – get another doctor. I also kept highlighting the incredibly loud, weird noises he made when he was sleeping to the pediatrician and we were sent to an ENT who diagnose Larynogomalacia. He said he would grow out of it – and he has.
I would HIGHLY recommend pre and probiotics – not just one… BOTH. Our pediatrician rolls his eyes at them, but I don’t care because I KNOW they have helped his tummy, his reflux and they keep him regular. Don’t expect to see immediate results, there is a period of ‘die off’ where the bad bacteria is being killed off by the good. This can make a baby crabby. Stick with it, it will pass.
I would highly recommend finding a way to really elevate your baby safely in the crib. Our son was so tiny that we didn’t actually get any use out of the Tucker Sling that was recommended to us but with some rearranging, we used the Tucker Wedge alone (which, let me tell you, is HUGE)and lifted it up at the ‘thin end’ so the angle wasn’t quite so severe. Rolled up sheets taped to the mattress and covered by the crib sheet kept him from sliding down or across. Books at the end of the crib helped with further elevation.
Thickening feeds can help a great deal. Don’t discount it until you try it. Beware though – we now have a baby who will only drink thickened formula! It piles on the pounds which is great if your baby is underweight (ours was, not now) but maybe not so much if you have a little chubby!
Look at your baby’s formula. We moved to Alimentum to check for protein intolerance, which was ruled out, but we kept him on that formula as there was no reason to change him. He is now on Enfamil GentleEase and doing well. From a personal point of view, I did not want to keep on a formula that stopped him from getting exposure to these proteins and thus causing potential problems in the future.
Feeding Therapy helped a great deal as our son had issues with feeding (formula, not solids) correctly. Dr. Browns bottles helped us too.
Trust your instinct on when the medication is no longer required. At around 7 months of age, we dropped the morning dose of Omeprazole to see how he was. Nothing happened so we dropped the evening dose – it took maybe 2 weeks to be confident enough to drop each dose. Another two weeks or so, we dropped the morning dose of Zantac, and then we bit the bullet after a week or so and dropped the afternoon dose. He was finally off all medication. I still check when he spits up – which is rare and mainly due to an over-full tummy – by smelling the spit-up for acid. Gross, I know, but it stops me worrying about a return of the reflux when I don’t smell acid. So far, so good, but we’re still on high alert. He is no longer elevated and sleeps on his back with no issue at all.
Take heart. This too shall pass. Really, it will. It can be a long, rocky road but there is light at the end of the tunnel. Our son is now 10 months old, off all medications, eating solids like a champ and despite his prematurity has reached all developmental goals for his actual age and surpassed all for his adjusted age. We finally have a happy baby (when he isn’t teething!) who sleeps through the night and eats and drinks without pain.