My 10 week old is struggling with what I was told was silent reflux. She doesn't spit up often (though when she does it is major) but she does gasp, cough, gag while feeding/when she is hungry. She wakes herself up at night and it sounds like she is having difficulty breathing lots of gasping. Every morning at 6, she sounds very congested and gaspy and will cough up a thick amount of breastmilk and fall right back to sleep. She is on 5mg of Prilosec which has helped reduce the gagging and the jerky movements but now she seems to be rushing her meals- nursing very hard maybe 3-5 minutes at a time, with lots of breaks in suction and milk dribbling out and after each nursing session will break off gasping, coughing and gurgling. She arches often and moves a lot seemingly trying to get comfortable. She always sounds like there is something in her chest and nose and her cries/burps sound very wet. The priolosec has helped but I don't feel enough but because she is gaining well and not fussy I don't feel I am being taken seriously. I think she is just a passive baby and just not a big crier. I have an older daughter so I know what she displays is not normal and it worries me that she will stop breathing and is in pain. I am worried this will effect her development in other areas as she grows. Any advice on how to get the doctors to take this more seriously?
Q: Infant with silent reflux-how can I get the doctors to take this more seriously?
Hello! My daughter was a silent refluxer too and I know it is harder for the doctors to understand the problem. A silent refluxer tends to gain weight just fine because t here is little to no spit up/vomiting. The coughing and gasping are indicators that your daughter is struggling to clear her airway and avoid aspiration. The Prilosec will reduce the acidity so the esophagus will be protected from irritation.
Here are some other treatments to consider:
Positioning: Ask the doctor if your daughter can be positioned on a wedge/sling for sleeping.
Nursing: Is a strong let down reflex causing the choking? Maybe express a bit of milk first. some nursing moms find that they have to keep the baby as upright as possible for feeding so the baby doesn't regurgitate during a meal. If the food is trying to go down at the same time the stomach is refluxing, there is going to be a coughing/choking/gagging event. Nursing on demand will allow her to take in what she needs. I found that one of my babies did better if she emptying one breast only. then switched and drank from the other side at the next meal.
A lactation specialist with experience with GERD can be very helpful.
Communicating with the doctor. My book, Reflux 101: A Parent's Guide to Gastroesophageal Reflux has an entire chapter on communicating with the doctor. I will give you a summary. You may want to document a typical day: eating, sleeping, coughing, crying, etc. You may need to visit the doctor more often than the typical schedule of well baby check ups. I think scheduling a "sick visit" just to discuss the reflux sends a message to the doctor that this is a concern that needs attention. I encourage parents to write down all of the symptoms they are seeing. Then highlight the 1-3 top concerns. If you go to the doctor with a list of 10 symptoms (which can happen with reflux!), make sure he/she knows that of all the symptoms, the coughing and choking is your #1 concern. Ask the doctor to really address the top concern in the treatment plan.
I think it helps to bring another family member to the "sick visit". If grandma, dad or someone else have seen your daughter struggle with feeding, having another person's point of view at the drs visit can be powerful.
Good luck and let us know how you and your daughter are doing.
Jan Gambino
The Reflux Mom
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