ALTE and GERD

"What I didn't know at the time is that ALTE (Apparent Life Threatening Event) can be a symptom of severe, uncontrolled reflux."

The first time Sally experienced an ALTE and GERD was also the day I had my first panic attack as a Mom. I watched in horror as my baby appeared to choke (even though she wasn't being fed at the time) and struggled to breathe. She turned bright red and then a scary shade of purple before I was able to get her breathing normally again. Sitting in the ER that day, petrified for my little girl, I admit to feeling devastated when they discharged her with no diagnosis other than an a very off-hand ‘could be reflux related—maybe?’ Part of me wanted to beg them to admit her, I was so terrified to bring her home and have it happen again (and it did happen again, with similar results).

What I didn’t know at the time is that ALTEs can be a symptom of severe, uncontrolled reflux. Because it is a symptom rather than a diagnosis, it is important to determine the underlying cause or condition that is causing an ALTE.

The first time Sally experienced an ALTE (Apparent Life Threatening Event) was also the day I had my first panic attack as a Mom. I watched in horror as my baby appeared to choke (even though she wasn't being fed at the time) and struggled to breathe. She turned bright red and then a scary shade of purple before I was able to get her breathing normally again. Sitting in the ER that day, petrified for my little girl, I admit to feeling devastated when they discharged her with no diagnosis other than an a very off-hand ‘could be reflux related—maybe?’ Part of me wanted to beg them to admit her, I was so terrified to bring her home and have it happen again (and it did happen again, with similar results).

What I didn’t know at the time is that ALTEs can be a symptom of severe, uncontrolled reflux. Because it is a symptom rather than a diagnosis, it is important to determine the underlying cause or condition that is causing an ALTE.

What causes ALTE?

I've since learned that with proper investigation, the causes of ALTEs are usually easy to identify and differentiate based on symptoms and history. For example ALTE and GERD:

  • An ALTE in a baby who also has developed viral respiratory symptoms like cough, sneezing or runny nose in the winter is likely due to a viral infection like RSV.

  • An ALTE associated with respiratory irregularity and abnormal repetitive movements could represent a seizure.

  • In a baby that experiences choking and gagging in association with feeding or spitting up (refluxing), an ALTE is likely due to underlying gastro-esophageal reflux disease (GERD). This is the most common cause of ALTE in infants, accounting for approximately 30% of all cases, and was what caused Sally's episode.

ALTE and GERD

In his book ‘Pulmonary Manifestations of Gastrointestinal Diseases,’ Joseph Levy writes:

ALTEs are defined as frightening events affecting infants who, during the episode, appear to require resuscitation (usually mouth-to-mouth breathing for perceived apnea) and look cyanotic (or pale) and lifeless, and who were sometimes observed to have had a preceding gasping, choking, or gagging trigger….Characteristically, by the time emergency personnel arrive at the home and bring the infant to the emergency department, there is little to support the parents' concerns about a life-threatening event. (Joseph Levy, in Pulmonary Manifestations of Pediatric Diseases, 2009)

Reading this was like a revelation to me and a great resource on educating myself on ALTE and GERD. Similarly to how we had been treated when bringing up our concerns about Sally’s worsening reflux (brushed off by her original GI because ‘she’s gaining weight, she’s fine’), her recurrent episodes of ALTE had always resolved by the time we reached the hospital, and to staff I must have seemed unnecessarily hysterical.

Links between GERD and ALTE

  • Up to 80% of infants who undergo testing for ALTE can have abnormal pH monitoring studies

  • Frequent spitting up is noted in the history of 60-70% of infants with ALTE and GERD

  • The likelihood of GER/GERD being responsible for an ALTE episode increases if the event occurred within the first hour after a feed and if they were awake at the time

Managing GERD associated ALTE

The way ALTE and GERD are managed has changed significantly in the past two decades. Whereas surgical intervention such as fundoplication used to be the norm at some hospitals for managing GERD and reflux related ALTEs,  today more conservative measures, such as treatment with a PPI (proton pump inhibitor) is now what is most commonly recommended.

Every baby is different and although there is no one size fits all treatment for the management of GERD, the goal should be to get your baby 100% painful symptom free. In Sally's case, she really struggled the first few months we tried using a PPI with her. She often seemed even worse than before, and her respiratory symptoms weren't improving. We switched from lansoprazole to omeprazole and back to no benefit. I started to worry that maybe the problem wasn't GERD, and that something much more serious was going on.

We then learned that studies have shown that babies metabolize PPI meds much faster than adults and older children--and it became clear that the problem was not the medication, it was the dose. We were  finally able to get the acid adequately suppressed once we began following Marci dosing recommendations with a PPI and we haven't experienced an ALTE since.

Some Final Thoughts on GERD &  ALTE

Hopefully all of this is unfamiliar to you, and your baby hasn't experienced an ALTE. In that case, I do think it is still important to be aware that they can happen in association with different causes, and that one of the most common is infant GERD. I had no idea that the two could be connected and that the fact that they continued to happen  was a sign that her original low dose of PPI wasn't giving adequate symptom relief. 

If your baby has experienced an ALTE,  it's worth considering GERD as a potential cause, and whether current treatments are working well enough to keep them, and other severe symptoms, at bay. You can read more about ALTEs and their association with reflux here.

Thanks for reading my story on ALTE and GERD. You can always connect with me live in the Infant Acid Reflux Solutions Facebook group for questions.

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