One of the hardest parts of being a parent is when to react and how to react. It’s usually not the situation that needs triaging, but it’s the reaction. First time parents are notorious for this. Us included. Within the first 24 months of life Makenzie went to the ER and urgent cares 3 times because we thought she had either concussions, broken bones or both. All false alarms. Lesson learned.
So with kid #2 we were ready to be laid back & relaxed. But then kid #2 started passing out. At the sweet age of 4 months, Mitchell lost consciousness for the first time. Then it happened and again and again. Approximately 60 more times in the past 10 months, including 4 episodes in the past 24 hours.
We are no longer laid back or relaxed. We’ve been to our pediatrician’s office about this multiple times. In fact, we used to call them after every single episode. It was the least we could do after watching our son turn blue, go limp and lose consciousness. We came close to dialing 9-1-1 every time but then he would wake back up. He would start breathing, and so would we. But it continues and we recently saw what we think was seizure-like activity. That warranted a 9-1-1 call but the paramedics knew less than we did.
What we have been told is that this is most likely a form of involuntary breath-holding syndrome. Likely it will go away by the time he is no older than 7. And likely there is no long-term effects. But yet, we are still highly unnerved. Somehow it doesn’t seem normal to watch your child lose consciousness for something as simple as a diaper change or a loud noise.
So now we’re continuing on the path of figuring out where to go next. Ultimately we just want a physician who deals with this regularly to give us a thorough understanding of why it’s happening and what to expect. Dr. Google has led us in circles. Our pediatrician is wonderful but is not an expert on this. The neurologist was perhaps an expert but poorly able to communicate anything helpful to us. In one sentence he said it’s not a big deal, and in the next sentence he said we need to see a cardiologist. So that’s where we head next. But we feel like we’re driving along without a map in a fog.
Perhaps it’s time we stop and ask for directions. There has to be someone out there (or many someones) out there who have been down this road before. Is there an expert out there on this, or another set of parents who have figured out which tests to run and which tests can wait? If so, please pass along your insight!
Much appreciated,
Erin
