Today is the day. I am six weeks postpartum from my victorious VBAC delivery (vaginal birth after cesarean) and I am going in to see my friends and coworkers for my follow up appointment. This is the day to come in with my squishy baby girl so I can pass her around while gushing about how magically in love I am.
Except, that is not at all how I feel. I feel dread; pure unadulterated dread at the simple task ahead of me. Getting out the door, to my doctor’s office, and surviving the appointment without a monumental meltdown seems like a herculean task. My baby girl is ball of screaming fury 90% of the time and I am drowning in a deep dark undulating sea of maternal anxiety and my self-perceived failure as a mother. Yet, I am undeterred. I can do this.
She screams the entire hour long car ride. I park in the garage and get out to attend to my little girl. She is red faced and sweaty from our torturous journey. I can do this. I CAN do this. She is screaming and arching, and writhing, and gurgling as I unstrap her from her car seat and try to calm her. She is rooting at my breast, clawing at me. I freeze. Feeding usually makes her worse but denying her is clearly not an option. I just unloaded all of our stuff. Should I reload and get back in the car to feed? I CAN do this. She is not going to wait. I pop my tailgate in the middle of the dank dark parking garage and crawl in with my seething twisting baby and attempt to breastfeed.
We sit and we both cry.
In the waiting room she mercifully settles and wiggles about fussily in my arms. Almost there. Almost there. Then, an explosive vomit bubbles out of her like an erupting volcano. There goes our last outfit. There in the middle of waiting room, I change her, wipe her down from head to toe, and fit her in nothing but a diaper. It is all I have left. The nurse calls our name and I trudge in with my bundle of joy battle worn and weary.
My doctor is also a coworker and a friend. She knows me. As she walks in I put on a brave smile, but my face says it all. I tell her about the crying, the vomiting, and the endless sleepless nights. I tell her of the lack of support from my doctors, the dead ends, the frustration, and doubt. “Are you depressed Jes?” she asks me. Without hesitation I reply, “Why yes. I believe my husband and I both are.”
Fast forward a year and a half later and I can still feel the hollowness reverberating in my heart. I felt so very alone with my sick little girl. As many of my friends and followers know, my daughter suffered from infant reflux and this recounted day was a low point for me. I was still planted in the dissolving foothold of denial. Desperately trying to manage my oversupply issues and pull from my experience with my last colicky baby, I thought I could manage this. I am a nurse. I am an experience mother. I know what I am doing. It was not long after that I realized I was way out of my depth. There was something WRONG with my daughter and the low dose of Zantac they had put her on had not even begun to touch it.
Not long afterward, I ended up with her in urgent care. After an hour of waiting, the insightful advice I received was to “put rice cereal in her bottle.” When I informed the doctor that this was not evidence based practice and completely unhelpful since she will not take a bottle despite my best efforts she shrugged at me and haughtily replied, “Well good luck then. I hope you have lots of support at home. It will pass in 6-9 months.”
This is not an uncommon tale. In fact, I would wager the majority of reflux moms would have similar stories of doctor’s placating them with unhelpful or INCORRECT advice. For me, as a healthcare professional, it was absolutely staggering how little help and support I received for my daughter while fighting this battle. By the end of my walk with reflux I was often educating my doctors about current research and medication administration. As I stormed out of Urgent Care flushed and angry from letting that doctor know exactly what I thought of her advice and bedside manner, I made a vow that I was not going to take no for an answer any longer.
Soon after, I discovered several Facebook reflux support groups. The nurse snob in me was initially skeptical, leery of mommy chat board advice. The reality was starkly different than my preconceptions. These moms were veterans. They knew the facts, they had research to back it up, and they were full of meaningful advice. This is when I found Infant Acid Reflux Solutions and Dr. P.
For those of you who are new to the world of reflux, Jeffrey Phillips PharmD is kind of a big deal. Not only does he personally field questions on the support page (how amazing is that?) but he was also the lead in the benchmark study known as MarciKids addressing dosing recommendations for reflux medication in children.
“What we learned was that infants metabolize the PPI [proton pump inhibitor] drugs very quickly (~3 times faster than adults) and most importantly that the very low doses of PPIs (like Prevacid) that were being used were way too low to see any benefit and in some cases made matters worse by creating what is commonly known to most moms with little refluxers as The Acid Battle.”Dr. P
Preach it Dr. P! Reading this was an “Ah Ha” moment for me. Before MarciKids, Dr. P also invented the immediate release PPI, Zegerid and the oral compounding suspension TummyCare Max, TCM.
TummyCare Max is significant because it makes any PPI (whether it’s OTC or Rx) on the market, into an immediate release suspension, which means it does not need to be timed around an infant’s eating schedule. This is nearly impossible to manage, as these infants are either comfort feeding all the time or refusing to eat at all.
TummyCare Max is actually how I found out about Dr. P. All over the reflux boards, moms were raving about this product. TCM is the only pre-formulated compound specifically made to assist PPI dosing for infants with acid reflux. It is meant to be suspended with a prescribed PPI. All PPIs are suspended for infants but there a few major differences between standard suspension used in pharmacies and TCM. Most infant reflux oral suspensions are only shelf stable for 7-14 days. After that, they loose their potency and are no longer effective. Yet, the script is for 30 days and insurance will not cover a refill before the month has run out. This leaves parents with a medication that is no longer functional for the last two weeks of their script. TMC is proven to be stable 30 days or more. One of the other main selling points is TCM’s ability to make any PPI immediate release (like Zegerid). While, I never personally used TCM I have heard enough reviews to know it has been well received by other parents. If this sounds like a product that could help you, you can learn more here!
Through advice I received on the support groups from other moms and Dr. P. himself, I was armed with a plan. Medical studies in hand, I went to my doctor and told her I wanted my little girl to be on MarciKids dosing. Because I was prepared and my new doctor was pretty awesome, she agreed to give it a try. It worked and my daughter began her road to recovery.
This process of discovery, education, formulating a plan, and execution took us months. She was over six months old by the time we started MarciKids dosing and begin to see improvement. It was too long a wait. She should not have had to endure all that pain while I learned reflux pharmacology 101 to educate her doctors.
I have spoken to numerous other mothers of refluxers. I know this is a fundamental problem in the treatment and care of these babies. There are far too few providers willing to take parents complaints seriously and even fewer that know how to medicate them properly.
There are people out there trying to make a change. Companies like Infant Acid Reflux Solutions are among the few that are taking steps to make good care available to parents. Their newly launched telecommunications service allows parents to speak directly with a pediatrician specializing in infant reflux in an online virtual visit. They are able to formulate a plan and prescribe medication in line with the practices we know to be effective. I cannot tell you how much I would have appreciated a service like this. I had to wait 8 weeks for my first appointment with a GI specialist. Eight weeks seems like an eternity with a colicky infant.
Infant Acid Reflux Solutions offers on a broader scale exactly what their name promises. Solutions. From free e-mail consults with Dr. P to providing a presentation for parents to bring to their baby’s doctor, they have thought of it all. It is phenomenal. In my practice I tell any mom with a refluxer that half the battle is educating yourself and becoming an advocate for your baby; the other half is finding a healthcare team that is on the same page.
My daughter was recently weaned off her reflux medication at 16 months. During the hard times, I promised myself I was going to take all the darkness and hardship my family experienced and turn it into something good. I wanted to be a light shining bright at the end of a long tunnel. I know being the caretaker of a refluxer can leave you feeling like you are drowning. Infant Acid Reflux Solutions was a lifeline for me. I think they can be one for you too.
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Infant Acid Reflux Solutions. (n.d.). Retrieved November 09, 2017, from https://www.infant-acid-reflux-solutions.com/
Phillips, J. O., PharmD, Siddiqi, S. H., Burnett, J. E., & Bothwell, M. R., MD Surgery. (2007). Pediatric Patients Have Shorter Lansoprazole Half Life Than Previously Reported . American Journal of Gastroenterology, 102, 2nd ser. Retrieved November 9, 2017.
This post is sponsored by Infant Acid Reflux Solutions, but all opinions are my own. The opinions in this post are from my personal experiences and are not to be construed as medical advice.