Clarity!  What a beautiful thing.

It’s been a long & emotional few days but given the huge amount of support we’ve received lately, I owe a blog post to give updates on what we discovered at Cleveland Clinic.

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On Sunday we headed to Ohio in preparation for our visit to the Cleveland Clinic on Monday.  Some time with Nana & Papa always makes things better, especially on the day before an important doctors appointment.

“Can you turn on Elmo, Mom?”

There is no doubt that the Cleveland Clinic is amazing.  We met with a fantastic pediatric neurologist who did an incredibly thorough job of understanding what’s going on with Mitchell.  Here’s what we learned:

• Mitchell is experiencing cyanotic breath holding spells.  These are usually caused by either a change in the child’s breathing or a slowing of the heart rate. These reactions may be brought on by pain or by strong emotions.  In cyanotic spells the child’s face and lips turn blue and then they lose consciousness.  And in case the doctor wasn’t sure, Mitchell confirmed that it was cyanotic when he passed out smack dab in the middle of the appointment while the doctor was in the room.  Good timing little buddy!
• As for the suspected seizures, it’s not what we thought.  Mitchell is actually experiencing hypoxia due to the lack of oxygen during the breath-holding spell.  Think of a computer rebooting.  His body is doing the same thing after some of the episodes.  Although he is not responsive while in this hypoxic state, the Dr. said this is not harmful because he is breathing.  I’m not exactly comfortable with this yet, but we will take it one day at a time.

We have a few more tests to confirm everything we discussed, and then it’s back to normal.   Or our new normal as I’ll call it.  Unfortunately this might get worse before it gets better because this type of situation peaks between 18 months – 3 years so we are preparing to have many days with many pass-out episodes.  It gives Terrible Two’s a new meaning.   But by age of 6 or 7 at latest this should go away completely.  Hooray!!

So now we do our best to manage this.  To be honest it feels slightly overwhelming right now, but we will just take it one day at a time.  There is a huge part of me that wants to snuggle him up forever and never let him go, but I realize it’s just not possible.   So we will choose to focus on the good!  And there is plenty of good for this cute, sweet, lovable baby boy of ours!   And despite the fear this causes, we are SO incredibly lucky!   Mitchell is able to live a normal & happy life, and we finally know that this is not going to cause him any harm.

On another note, Mitchell just can’t stay away from the doctors office (perhaps he will go to med school someday?).  Tonight we found out that both he and Makenzie have left ear infections.  Looks like we might be headed for tubes in his ears.

Our deepest appreciation for all the thoughtful notes and positive thoughts!

Much Love,

Erin

For you Little M

Talk about being blown away by support!  We know that you all have your own busy lives but since posting about Mitchell’s frequent pass-out episodes a few weeks back we have been inundated by calls, texts and messages from people who have experienced this and wanted to share their insight, and from people who just wanted to say that they care.  Thank you everyone!   Our kids are so lucky to be so loved!

M & M say Thank you!!

But on a serious note, we are still in search of answers.  The pass-out aspect seems to fall clearly in the category of the involuntary breath-holding syndrome, but we are still baffled by the (potentially) seizure-like activity that sometimes occurs after the episodes.   Our little guy had an awful episode this week and spent about 7 minutes in an unresponsive state.  So scary.

After weeks of doctors visits and few answers we decided to head to the best of the best and we were highly fortunate to get an appointment with a well-known pediatric neurologist at the Cleveland Clinic.  We are thrilled!  We are also nervous but overall we know that this physician could be the one to help us gain clarity.

Our little boy ready for more carefree days at the park!

We will ideally know more early this week.  We will keep you posted.  Thank you SO much for all the good thoughts!

Much love,

Erin

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