The boys and I were having a wrestling/tickling match tonight and I stopped because I noticed Connor's lips turning purple. After a few minutes we started up again and they turned purple again. I was kind of "testing it out" and noticed that they turn purple within a few seconds of him breathing hard or laughing hard (holding his breath for even just 5 seconds) but then go back to normal red almost immediately.
Would that overly concern you?
He has been cleared twice now by Cardiology, he has a functional murmur, he had an ekg and echo and his heart is structurally normal. Cardiology wants to see him one more time around age 5, but they have zero concerns about his heart.
He's followed every 3 months by Pulmonology because of laryngo/tracheo/broncho malacia. It was bad as an infant, you could hear him breathing a room away, but now only the Pulmonologist can hear it. Sometimes his laryngomalacia will "act up" if he has food residue in his airway (he still has some dysphagia) and sometimes his bronchomalacia will "act up" if he's sick. He has an inhaler he sometimes uses when he has respiratory infections. He will probably get a diagnosis of Reactive Airway Disease at some point. Sometimes activity or illness can trigger bronchospasms, but that wasn't happening tonight. His lips have never turned purple during a bronchospasm.
He is not sick with anything respiratory right now, he is on antibiotics for yet another ear infection (this one ruptured his ear drum)
He has a history of dysphagia with aspiration, but hasn't had any issues with that for over a year now.
It is cold outside, but not too cold inside (our house is 63 degrees right now).
He is very pale-skinned, so it would definitely be easier to see it on him than my other boys.
I also wouldn't worry since he is being seen by the best, a cardiologist and pulmonologist. They seem to think this is a benign finding, so I would trust them. As long as your child doesn't exhibit simultaneous respiratory distress, there is no reason to worry. Holding his breath and laughing hard could definitely explain the finding!
However, as a mom, your probably want to make sure you cover all your bases & ensure 100% that there is nothing to worry about. I understand, I'm the same way. Good luck in your search for info!
I don't know much about the heart/breathing aspect, but I wanted to chime in and let you know that my very pale son has lips and fingertips that turn purple when he is excited or upset. Completely free of heart symptoms and has never had any breathing issues.
C-section due to pre-eclampsia and HELLP:
Well, we got a pulse ox and I've been checking him sporadically. At rest or during normal activity, he's always above 95. But after a long tickling match with his Papa, I tested again and he was 84. I made them stop and a few minutes later he was back to 94. A few minutes later, he was 98. So it appears that he does indeed de-sat, but not for long.
Before reading your last reply, I was thinking that frequent breaks would be good, but not total restriction, and I wouldn't worry too much about his heart in this case since it does happen frequently to healthy, pale children. But I also know how you feel and think it would be reassuring to bring it up at your next visit, or maybe just a quick phone call to ease your concerns.
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Plus DH & DD1(8) & DS(6) & DD2(5) & DD3(2)