My little GERDling:
I was unable to exclusively breastfeed my firstborn due to low milk supply, so she was supplemented with formula starting at 4 weeks old due to failure to thrive. She had what I would call normal baby reflux or rather she was a happy spitter but did well on a gentle formula. When my second child was born in August of 2014 I was excited to get another shot at breastfeeding. Our breastfeeding relationship seemed to be going very well, as a newborn he nursed often, and by often I mean every 30 minutes to 2 hours, but on average more like every hour for the first 14 days. He always wanted to nurse and I quickly became exhausted. With regular weigh-ins, it became clear that I will never produce enough milk to breastfeed exclusively so once again we were face with supplementing with formula. We started with a standard formula but discovered quickly that it was not a good fit. He spit up frequently after formula feeds.
Our feeding schedule was on demand, I would offer the breast first, give him a bottle of pumped milk if I had it then formula, then pump. As he got older (about 8-10 weeks) and started eating larger volumes we noticed he was very gassy and would always cry after feedings. If he fell asleep during a feeding he would quickly wake up crying, angry, upset and arching his body. Every time he would wake up he always seemed very angry, upset and his face would contort in agony as he wailed, cried and arched his little body. In addition to these behaviors I noticed he constantly wanted to nurse even if he had a full stomach. Unlike my first child who got angry when my breast was empty, this baby didn’t ever seem to mind that I did not have a full meal available for him. I co-slept and nursed him every night ALL night. I was starting to get very frustrated and I my gut instinct was telling me that something was not quite right. By this time we were feeding him Enfamil Gentelese. His symptoms progressively got worse and more frequent. As a breast milk and formula fed baby there is not much information out there about what normal stool should look like when babies are being fed both breast milk and formula. I was second guessing myself often when I would wonder if his stool looked normal. I could swear that he almost always had mucous in his stool but then I wondered if that’s normal with formula fed babies and I just never noticed it before. He also always had a small diaper rash around his anus that just would never go away no matter what I put on it or how I protected it. I thought this was unusual.
When he was asleep he would toss and turn, he would grimace and cry out, you could hear the gas in his little body moving around and he frequently passed gas audibly. He arched his back and stretched out his whole body a lot while sleeping and always very quickly after finishing a meal. This arching was frequently accompanied by crying or moaning. I really felt strongly that my now 3 month old was in pain, and I thought that his pain was worse after eating. Once we started supplementing with formula he was gaining weight well, a little too well, he wanted to eat all the time but we were careful not to overfeed him. As a nurse and a GERD sufferer myself I started to wonder if he had reflux and if his reflux was worse than just normal baby reflux. I had a new friend, who had a child with reflux and when I suggested that I thought Alex might have reflux, she agreed and said her baby had similar problems when he was the same age. She gave me great advice and told me about the Infant Reflux: Support for Gerdlings facebook support group. I promptly joined and started seeing stories similar to mine.
I tried an elimination diet, twice, we tried several different brands of formula, different types, we tried the hypoallergenic formulas, we had already tried everything we could with the exception of trying soy formula or prescription formula or medications. At this point I knew he had reflux and I wanted advice on how to treat him. We were blown off by several doctors who said, “he is just colicky”, they sent us on our way and told us to give smaller feedings more often, try gas drops, elevate him after eating, and that because he was gaining weight well that he likely didn’t have reflux. I tried to be respectful of the doctors initially, I wanted to give them the benefit of the doubt that they knew what they were talking about but it was clear that these doctors were not used to treating reflux and either weren’t comfortable with it or weren’t knowledgeable enough to treat it appropriately. They refused to give us a referral to a GI specialist (hooray for Navy medical). The doctors I saw were not very knowledgeable on the subject so I started doing my own research and discussing my findings with the pediatric doctors at work.
I had decided enough was enough and I was going to demand medication, but first I wanted to switch to a soy formula to see if it helped with the diaper rash and the reflux. We were on the soy formula for about a week before starting any medication. Thought the formula switch was not the miracle cure we were looking for, the amount of mucous decreased and the diaper rash went away completely. After talking to my doctor co-workers and doing some research I decided I wanted to start with a PPI instead of an H2 blocker. I ultimately was able to bully one of our Navy doctors into prescribing a PPI. Our baby refused to take it no matter what I tried and I was limited with what compounding was available. With the support of my co-workers, the research on this site and my research, I decided to try the Zegerid home compound, hoping that my baby would take it with a bottle and that the immediate release would be the answer we were looking for. My friend Stephanie and this site have been a life saver. Once I started medicating my little boy with the zegerid home compound, we saw improvement in about two weeks. We were giving him 5mL of the compound twice daily. His first dose was given with his first bottle and his last dose was given with one of his last two bottle before bed, taking care to try and get his last dose in by 6pm. He was finally starting to sleep more, he wasn’t in as much pain, and he seems to be a much happier baby. We are still doing twice daily Zegerid compound and it is continuing to help with his reflux.
He slept in the rock and play until about 6 months, which is about how long it took us to get good control over the reflux. Once he was sleeping in his own crib he initially had to have the mattress elevated but now at 7 months he is able to sleep in his crib flat, or usually I see him sleeping on his side.
I briefly tried to go back to a dairy based formula but that was a clear failure within 24 hours. He will stay on soy formula for now. We have been trialing solid foods over the last month with some success. Teething and solids have definitely caused some mini flares but for the most part it has mostly only affected his ability to nap during the day and not his nighttime sleep.
At his 6 month follow up I was finally able to see a doctor I trusted and she agreed with the plan I had mapped out including my intention to seek out better advice from our doctor once we moved and possibly a GI doctor if needed.
I don’t know what I would have done without the information I found on this site and the Facebook group Infant Reflux: Support for Gerdlings.
