Holding our Breath

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

Comments

  1. I had this same breath-holding syndrome as a young child, starting at around this same age. The doctors said essentially the same thing: that there was nothing they could do and that it would go away in a few years. The breath-holding spells continued to get less frequent and by the time I was 4 or so they stopped altogether. There were no significant lasting effects, though I do have weather-induced asthma, which means that the extreme cold and damp does result in some chest pain and breathing difficulty, but not significant enough to use an inhaler, and I just have to remember not to do too much activity outside (mostly running causes the issue) when the weather is like that. I know that in your position I would probably continue to seek out other doctors to try to stop the passing out, and my comments aren’t intended to discourage you from doing so. I am now 30, so this was a long time ago, and there is a possibility that there have been medical advances in understanding these issues since then. I just wanted to share the story of my background since I thought it might be helpful.

    • erinqmcgee says:

      Hi Jessica, thanks for your note. I appreciate you taking time to post this. This is good to hear! How frequent were your episodes and did you ever have seizures related to them?
      We know it possibly may be a simple breath holding situation and although scary it may go away. Your story makes me feel more hopeful that it is only that. But in the back of my mind I’m just not 100% certain it’s not something else, which is why I stay awake at night. Ideally we want to find a specialist who sees cases like this regularly to tell us more details and rule out all the scary stuff, and also give us insight on when and if to expect more seizures, etc. Thanks for taking time to share! This makes us feel confident that there has to be a Dr who sees this regularly enough to be our expert on the topic until he (hopefully) outgrows it.

      • Hi Erin. I wish I had more specific information for you, but the passage of time means much of the particulars have been forgotten. As far as I know, there were never any seizure symptoms. Rather, I would hold my breath, start to turn blue, and pass out. No convulsions or anything along those lines. The doctors at the time told my parents to just let me pass out, because when I passed out, I would start breathing again. I believe the term they used was infant breath-holding syndrome. I do not think they were as frequent as you describe here with your son, though. I think they mostly occurred during the day rather than at night, and not on a daily basis, but more like every few weeks. I believe I would rouse fairly quickly after passing out.

        I’m sure you have thought about this, but perhaps a test for epilepsy is a good idea? I have also heard that anemia can lead to passing out episodes, so maybe asking a doctor for a test of that? If he exhibits seizure-like symptoms, it could also be RAS (http://www.stars.org.uk/patient-info/conditions/ras). I will also get in touch with my mom and see if she has any additional information that might be helpful based on what she did at the time.

        • I just got off the phone with my mom, and my previous comment contained some inaccuracies. Apparently it did happen very frequently, as much as several times a day, or daily. I would give a little cry (wah), and a sharp intake of breath, and my eyes would roll back in my head, and my body would go limp, and I would pass out. I would wake back up right away. The whole thing would take less than a minute from passing out to waking back up. She said it could be anything–I would be sitting playing with a toy, and she would hear the little cry and breath in, and I would keel over. The doctor told my mom not to worry about it, and just to let me pass out and let me wake back up, and that regardless of how scary it was, it was actually completely harmless. His own daughter had also had the same syndrome, so that made my mom feel better about it, so maybe the key is finding a doctor who has worked with kids with this issue before. I had no seizure symptoms though, just the passing out. They did test for epilepsy but I did not have that. When I would pass out, my mom would take me outside into the cold and that would wake me right back up, or she would call my name to rouse me. She says as time went on, she could tell from the little cry I would give that it was about to happen, and sometimes she would just rush me outside into the cold and it would actually keep me from passing out, or maybe a cold compress on the neck or something like that. She says they told her most kids grow out of it by age 2, and that was the case with me. But she said it was very scary, and the people who worked at my daycare would freak out when it happened. She also said that she seems to recall that they told her it was something to do with either breath inhalation or exhalation, or that it can happen either on inhaling or exhaling, but mine had to do with inhaling, hence the sharp intake of breath before passing out. She thinks she may have the piece of paper with the info abut the syndrome somewhere in her files, which would be crazy if she still has it, but that she will look for it to see if it can give you any more info on it.

  2. Crystal Jones says:

    I just wanted to let you know you are not alone. My son was 2 years old when his first spell happened. He was running up a set of stairs, tripped and hit his solar plexus, held his breath and passed out. I rushed him to the emergency room and everything was ok. No broken bones or xoncussion. Then it happened again only the second time he was mad about going to bed and it was accompanied by a seizure. I contacted his pediatrician and had the gamut of testing done all to come back normal. The pediatrician told me the same as you, he would eventually grow out of it. The episodes and seizures increased in frequency until he was about 4 years old, then they started to decrease in frequency. I never did find a doctor to give.me a concrete answer, they just said some kids do it. I am sorry I cannot point you in a definitive direction but I can tell you that my son is now 19 and has no neurological defecits. The episodes did not take their toll on him. They were the scariest thing a parent can live through and to have no explanation for it.

    • erinqmcgee says:

      Crystal thank you for your note. It’s a scary situation but it’s good to know that your son has gone on to live a completely healthy & normal life! I appreciate your insight on this. It’s good to know we are not alone.

      • My daughter had these involuntary breath holding spells.
        As her mother and a nurse, I was frantic and reached out to every medical resource.
        I have information that can help you and sources you can get help.
        This situation is rare and medical experts aren’t aware of its existence or how to deal with it.
        You can contact me. I’d love to put your stress at ease.

  3. Linda Kuebler says:

    My daughter had these involuntary breath holding spells .
    As her mother and a nurse, I was frantic and reached out to every medical resource.
    I have information that can help you and sources you can get help.
    This situation is rare and not many medical experts are aware of its existence or how to deal with it. You can contact me. I’d love to put your stress at ease.

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