False Alarm

It could almost go without saying that after your child suffers a stroke the fear of it happening again will always be with you.  Always in the back of your mind.  Especially, if the cause of said stroke is yet to be determined.

This fear may not be warranted - after all, you've been dismissed from a highly regarded children's hospital being told the chance of a reoccurring stroke is very very rare.  You've gotten a second opinion from another highly regarded children's neurology department and have been told that although the doctor cannot guarantee that another stroke won't happen, the chance is very rare.  Your child has had countless tests, has been making nice progress in therapy, and overall seems healthy.

But that fear will be there.  After all, your child was perfectly healthy before the stroke.  The chance of a stroke ever happening in a child is rare and yet it happened to yours.  You've learned that there's one more test that could be done and it hasn't yet been done.  So you learn to push that fear in the back of your mind.

Until you go to tuck your child into bed for a much needed nap and he starts acting strange. 

Liam's stroke all started with him acting strange or goofy.

I wasn't thinking stroke, because his behavior wasn't as extreme as it was July 30th.  I was thinking that he had a transient ischemic attack (TIA). 

I was also thinking he was just tired and needed to sleep.

It started with him crying.  Since his ability to express himself is still difficult, if not impossible, in situations that are different from day to day phrases ("I'm done." "I need to go to the bathroom." "I want ______."), he couldn't tell me why he was crying.  So I gave him choices... "are you sad, does something hurt, does something feel funny?"  After our broken conversation he said something feels funny and pointed to his cheeks.  We did some of the neurological tests they've done in the hospital and at every follow-up appointment we've had since then.  We didn't squeeze my finger with his left hand. 

He just seemed "off". (and tired)

So, off we went to the hospital.  On the way I called my doctor's office to see where we should go.  Back to Loyola or to the closer hospital.  The doctor's advice - "Elmhurst won't know what to do with him.  Go ahead to Loyola - sounds like he's stable and they know him and will have people on staff who know what to do."

By the time we got to Loyola his mood had improved, but he was still saying his cheek felt funny.

To make a long, and sort of boring, story short: We spent about 3 hours in the ER being checked out by the attending doctor, and a pediatric neurologist.  He passed all the neurology tests with flying colors.  The decision was made not to do any imaging, but nobody there ever made me feel guilty for bringing him in for what could have been nothing.

As a matter of fact, they gave me the number to call to get into our original neurologist sooner than August 29th.  I was told to explain to the receptionist that he was seen in the ER today and that the neurologist that was on call would like his follow up to be moved as soon as possible.

Looking back and reflecting I'm confident that he didn't suffer a TIA and he was just overtired.  I do not regret taking him in to have the professionals look at him.  (Even if he did suffer a TIA that would not show up on a CT or an MRI - since he was presenting well while we were there, I'm assuming that is why they decided not to do an MRI.  And, of course, I did hear the doctors discussing how they cannot justify doing an MRI anytime a five year old complains about his cheek feeling "funny" - especially since the neurological tests they performed showed no signs of a stroke.)

I need to go back to focusing on therapy and making sure he gets enough sleep.  (We were out late last night and he does better with a good amount of sleep.)

Probably too happy to be in the ER.