Thursday, April 21, 2016

Our Silent Reflux Story


I'm writing to share our experience in the hope that it could help another family with similar issues.  


For the first seven weeks of Macie's life, she was a happy, content baby.  She slept well and long at night  She let anyone hold her.  In the car, she cried for only a minute or two before falling asleep.  We called her our "dream baby" because of how easily she adapted to life.

The week Brian went back to work after his winter break, Macie got a bad cold. What seemed normal at first progressed into something more serious and we needed to take her to the ER for labored breathing.  She was diagnosed with RSV on March 7.  There was a lingering cough and congestion for days so saline and a nasal aspirator became part of our daily routine.  Macie started waking often at night and not settling easily.  She cried much of the day, plus resisted naps and nursing.  At first we thought the congestion was irritating her and disrupting her sleep.  Then I thought maybe my supply was low and she was not getting enough to eat.  

By the end of March, the cough was gone and she began sleeping more soundly again, both at night and during nap time, but after only a day or two of clear breathing, the stuffy nose came back.  It was especially noisy in the morning.  We feared she was getting another cold, but no other symptoms developed.  We also considered allergies.  Regardless of the cause, something was making Macie cry for hours of every day.  We feared  it was our new version of normal.  I've parented a high-needs baby before, but his cries were different.  Nothing comforted Macie.  The kids couldn't hold her anymore and it was intimidating to take her out because we never knew when she would begin crying loudly and inconsolably.  I held it together okay in the daytime, but each evening I was zapped.  I had more than one sobbing break-down of my own. 

One day while she was sleeping, I started googling her symptoms-- hours of crying, stuffy nose, frequent hiccups-- and realized she was exhibiting signs of silent reflux.  Babies with this type of reflux rarely spit up because the stomach acid only comes partly up the esophagus before going back down.  Though it can occur from birth, it often does not begin until the baby is closer to eight weeks old. I felt as though a light went on.  The difficulties we'd been experiencing over the past weeks were all related...and there were ways to treat it!  We didn't have a high-needs baby or a colicky baby.  We had a reflux baby.

I made Macie a doctor's appointment for the next day.  As is typical with babies, Macie showed her happy, cheerful self to the doctor, but the doctor listened to my concerns and asked lots of questions.  She agreed that Macie was suffering from silent reflux and laid out our options.  She said we could try an elimination diet to see if something I ate was triggering the reflux or we could begin medication.  Considering we had been dealing with a crying, miserable baby for close to a month and we were all desperate for relief, I chose the medication. The doctor counseled me to be aware of the foods I was eating and to pay close attention to anything that seemed to exacerbate the symptoms.  

That evening I gave Macie her first dose of ranitidine (generic Zantac).  Ranitidine is an acid reducer and begins working within an hour, but can take up to three weeks to fully take affect depending how much damage has already been done to the esophagus.  We noticed a change in her temperament the first night!  She was visibly relaxed and nursed to sleep without a fight for the first time in weeks.  Over the next few days, she smiled more and interacted with the older kids.  They were able to start holding her again.  We had to be vigilant about her medication, though. Ranitidine has a very short half-life and Macie would grow irritable when it was near time for her next dose.



About a week after starting the medicine, Macie had another fussy day.  All babies have bad days so I didn't worry, but when we starting having whole strings of bad days, I felt a sense of dread. I read online that ranitidine dosage is sensitive to weight changes.  Since babies grow rapidly, I wondered if she already needed to up her dosage.  

I began researching natural ways to treat reflux and bookmarked this article about natural treatment.  

On Sunday, April 10, we were at a birthday party and I noticed Macie was happy and bubbly all day.  It was a strong contrast to her mood on the preceding days so I took a minute to write down everything I had eaten the day before (Saturday).  I noticed that, quite by accident, I had consumed very little dairy.  However, on Sunday at the party, I ate cheese and ice cream, plus we had pizza for dinner later in the evening. I waited and sure enough, on Monday, we had one of our worst days yet.  It gave me pause.  

Everything I read online said that if dairy was a suspected trigger for a baby's acid reflux, it needed to be totally eliminated from the mom's diet for two weeks.  That was how long it would take for the proteins to leave the body-- and therefore the breastmilk.  I cut dairy from my diet and noticed a reduction in symptoms in 24 hours.  Most noticeably, she only cried when she was sleepy or had a wet diaper, not all day long! For me it followed this formula.  Eat dairy and have a cranky baby the next day.  Avoid dairy and have a happy baby.  

The first few days I was afraid to hope.  Maybe it was coincidence, maybe wishful thinking, or maybe my imagination.  The kids started commenting on it, though.  They noticed how Macie was happy again.  They noticed how I was able to get in the shower before 9 am  instead of hanging out in the PJs until the middle of the afternoon. 

Macie's congestion cleared up, too.  Six days after cutting dairy, the congestion was mild enough to clear on its own in the morning without needing to irrigate and suction.  Nine days after eliminating dairy, she woke up with a clear nose.  The hiccups are better, too.  She still gets them, but only every few days.

Two surprising things came from cutting dairy from my diet.  One: the ranitidine became unnecessary almost overnight.  Where once we were counting the minutes until the next dose, now I would sometimes forget to give it to her right away.  (Cutting the medicine cold turkey can cause an acid rebound..)  And two: her pooping became more regular.  She had been going every four to five days and then having blow-out poops.  Her tummy wasn't hard and it is normal for some breastfed babies to wait days between pooping, but as the milk proteins left her body, she began pooping four to five times per day again.  (The color and consistency were gold and seedy so this was not diarrhea.)

Cutting dairy from my diet has not been as difficult as I expected.  I've never been a milk drinker, but I do miss cheese and I have a feeling that, foregoing ice cream this summer will be tough.  It can be tricky planning meals for my family, too, but there are so many good foods and flavors that don't involve dairy.  It simply takes new thinking. (I also discovered early that she and I can tolerate small bits of chocolate.  Better yet, Ghirardelli semi-sweet chocolate is made without milk.  The milk chocolate, obviously, but also the dark chocolate, do contain milk.)

I"ve added probiotic supplements both to my diet and to hers, to aid in gut health and healing. I bought mine over the counter at Target.  I specially ordered Macie's from Amazon.  It is a multi-species probiotic in powdered form, made specially for infants that contains 10 billion CFUs. I wet my finger so that the powder will stick and let her suck it off.  She loves it!

Today, Macie had a follow-up with her pediatrician. The doctor was pleased that she has gained weight. Reflux babies often lose weight either from excessive spitting up or because they resist eating when they associate it with pain.  In fact, Macie weighs a little over eleven pounds now-- only the ninth percentile for babies her age, but up from the third percentile where she hovered for awhile. The best thing is that she can use the medicine on a needs-only basis.

There were many days that the kids and I prayed for Macie  and asked the Lord to either make her well or give us patience and the wisdom to comfort her.  We are so thankful for Macie's health!


3 comments:

  1. I'm so glad to hear that you figured out a solution to make little Macie feel better! It's so hard to see little ones not feeling their best.

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  2. So glad she's doing better now!! My family includes 2 that need to be gluten and dairy free, plus one of those is also nut free. It requires planning, but it's totally doable! Thank you for the informative post :)

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  3. Sorry to hear about Macie's reflux So glad you found a solution!
    You should search vegan ice creams this summer maybe not as good as the real thing but very yummy:)
    Blessings

    ReplyDelete

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