I remember when my first son was born I looked at him and was overwhelmed. This person was my responsibility. Even as a pediatrician, I felt a sense of being lost in the sea. Remembering this feeling makes me have much more compassion on my patients.
The incredible fear the can carry into the office is palpable. I think you have to be a parent to understand. Most of the time I can find ways to diffuse the fear – through reassurance, diagnosis, or making a plan to come to a diagnosis. This is true in about 99% of the pediatric cases I see. Most kids aren\’t really that sick, and those who are can be treated easily.
There is one type of visit, however, that stops me in my tracks. It is called an Apparent life-threatening event or ALTE. UpToDate defines an ALTE as:
ALTE is the abbreviation for "apparent life-threatening event", a poorly defined term to describe an acute, unexpected change in an infant\’s breathing behavior that was frightening to the infant\’s caretaker and that included some combination of the following features:
- Apnea — usually no respiratory effort (central) or sometimes effort with difficulty (obstructive)
- Color change — usually cyanotic or pallid, but occasionally erythematous or plethoric
- Marked change in muscle tone (usually limpness or rarely rigidity)
- Choking or gagging
Unfortunately, an ALTE is only observed by the parent at the time of the event. They present either to the office or the Emergency room understandably panicked. Their baby has stopped breathing, turned blue, went limp, or choked. If a parent is not upset, I get really worried.
So the reaction of the parent is extreme. But what really happened? Nobody knows. Did the child really stop breathing, or is it an over-reaction to something that was a little scary? How do you reassure a mom when you don\’t know what really happened?
The good news is that there is no clear relationship of ALTE and SIDS (Sudden Infant Death Syndrome). The bad news is that it is very difficult to figure out what to do. Studies show that about 50% of the time, a diagnosis can be reached through exam and a careful history. The most common cause of apnea-like symptoms is reflux (that happens in nearly 75% of babies).
Even with a child who refluxes, however, there is often doubt in the back of your mind as a doctor that you are taking a risk at calling it "just reflux." So more studies are usually ordered. Here is a list of possible tests from UpToDate:
In one review of test results from a consecutive series of 243 infants admitted to a tertiary center with ALTE, 3776 tests were ordered, of which 18 percent were positive and only 6 percent contributed to the diagnosis
In the consecutive series of 243 infants with ALTE described above, among 171 infants in whom a particlar diagnosis was suggested by the history and examination, the following tests contributed to establishing the diagnosis:
- Blood counts, chemistries, and cultures
- CSF fluid analysis and cultures
- Metabolic screening
- Screening for respiratory pathogens
- Screening for gastroesophageal reflux
- Chest radiograph
- Brain neuroimaging
- Skeletal survey
- Electroencephalogram
- Echocardiogram
- Polysomnography
Among the 72 infants in whom the history and examination were noncontributory, only the following tests contributed to establishing the diagnosis:
- White blood cell count
- Screening for gastroesophageal reflux
- Urine analysis and culture
- Brain neuroimaging
- Chest radiograph
- Polysomnography
This means that there is an average of more than 10 tests ordered per child, with only 6% of them actually helping. Great.
Most of the time, the kids do great. Sometimes you put the baby on an apnea monitor – a device that lets out a shrill sound when the breathing rate goes down or the heart rate goes too high or low. The vast majority of alarms on these devices are false-alarms and can make an already anxious parent become even more anxious. But what else can you do?
I have never had a bad outcome with an ALTE. Most of the time the child does just fine. So when will the good luck end? It just puts a bad feeling in the pit of your stomach.
You might like to contact the Pediatric OT Co-inventor of RES-Q Wedge and brain storm about GERD
You might like to contact the Pediatric OT Co-inventor of RES-Q Wedge and brain storm about GERD
The RES-Q wedge page from AZReam’s site shows a beautiful picture of a young infant sleeping on their stomach. I don’t think that Dr. Rob is going to be touting the benefits of prone sleeping at home anytime soon. Having an ALTE from reflux does not mean that a child has GERD anyway.
So Rob, how do you convince a parent that an apnea monitor is not a good idea. I have utterly failed to do so despite the evidence that they do not reduce the incidence of SIDS and that they make the parents’ lives miserable with the false alarms.
The RES-Q wedge page from AZReam’s site shows a beautiful picture of a young infant sleeping on their stomach. I don’t think that Dr. Rob is going to be touting the benefits of prone sleeping at home anytime soon. Having an ALTE from reflux does not mean that a child has GERD anyway.
So Rob, how do you convince a parent that an apnea monitor is not a good idea. I have utterly failed to do so despite the evidence that they do not reduce the incidence of SIDS and that they make the parents’ lives miserable with the false alarms.
I always feel I am in a bind. I do tell parents all of the negatives, on the other hand the monitor does a little bit of CYA. If the child happens to have a serious event and you have not put a monitor on, then you are in trouble as well. I give the parents the facts and tell them that there is still probably a greater chance of a car accident than a serious event, but it always makes me quite ambivalent.
I always feel I am in a bind. I do tell parents all of the negatives, on the other hand the monitor does a little bit of CYA. If the child happens to have a serious event and you have not put a monitor on, then you are in trouble as well. I give the parents the facts and tell them that there is still probably a greater chance of a car accident than a serious event, but it always makes me quite ambivalent.
When I did my cranio-facial training the staff guy told me he was going into private practice soon (on adults). His logic was that stats show 1 death per 6 years of surgery in a major craniofacial paediatric program and he’d gone 8 without a death (although we had to start CPR on the table once while I was there on a 6 year old). He joked that he didn’t want to push his luck but I think part of it is that you don’t want to let yourself become complacent. My thinking is: put routines into my work, don’t take any chances, take ACLS regularly to remind myself what can happen and acknowledge the fact that sometimes you have to accept the things you cannot change.http://www.waittimes.blogspot.com
When I did my cranio-facial training the staff guy told me he was going into private practice soon (on adults). His logic was that stats show 1 death per 6 years of surgery in a major craniofacial paediatric program and he’d gone 8 without a death (although we had to start CPR on the table once while I was there on a 6 year old). He joked that he didn’t want to push his luck but I think part of it is that you don’t want to let yourself become complacent. My thinking is: put routines into my work, don’t take any chances, take ACLS regularly to remind myself what can happen and acknowledge the fact that sometimes you have to accept the things you cannot change.http://www.waittimes.blogspot.com
Good post.
Good post.