A heartbreaking end to a happy summer….

Its been pretty quiet around here on the blog front, the past couple of months.
Firstly because our granddaughter was visiting with us from England, and we were busy having way too much fun.

Then last week, after she left, our family was dealt a devastating blow.
Our three year old grandson, Bug, suffered a stroke.

Some of you may remember him from previous posts.
For those who don’t, here’s a photo I took of him at the end of August.

BugSuch a handsome, happy little fella.
Of course he’s still a handsome little guy, and for the most part, he’s still happy.

Not taking into account the numerous ‘febrile seizures’ he had between age 18 months and 26 months, there was nothing, health wise, that would’ve given any reason for us to suspect this would ever happen.
Our worst fear, at that time, was that he would have Epilepsy, which runs in our family. But the seizures seemed to just stop, and so we thought he was going to be ok.

Then last Monday, my daughter sent me a video clip of him.
She wanted to know if I could see anything wrong.
She thought his smile looked a little crooked.
To be honest, it wasn’t a good recording and I thought he looked fine.
She sent two more. There was no doubt, he wasn’t moving one side of his face.
Then his speech started to slur.
She rushed him to the nearest Emergency room.

The ER doctor told her Bug was having focal seizures.
Not a single ‘medical professional’ had, at this point noticed he wasn’t using his right arm.
Seriously!! With hindsight, this really angers me.
I realize that most people, myself included, are under the impression that apparently healthy children don’t have strokes, right?
Strokes are what old people have.
But after researching, statistically stroke is the number six cause of death in children.
You’d assume an ER doctor would know that, or at the very least know that children do have strokes.
So you’d also assume that if a child comes to the ER presenting the most common symptoms of a stroke that he might just consider that they may be having one.
But anyway, I’m more than a little upset at their incompetence here 😦

After a couple of hours of testing, they decided to transport him to another, more specialized hospital for an EEG.
The following pics are ones my daughter sent me from the hospital…poor baby 😦

2 1

The doctors at the second hospital informed my daughter they wanted to run tests to rule out what they referred to as ‘the bad boys’, Epilepsy, Tumors and Stroke.

After a 12 hour EEG, a bazillion blood tests and an MRI it was confirmed he had suffered an Ischemic stroke. The MRI showed it had affected a rather large area of his left brain.
At this point they started aspirin therapy, to keep his blood thin, and to help reduce the risk of another clot forming.

Another MRI, an EKG, another huge battery of blood testing and a heart scan was ordered to try and find the reason.
One by one the results were coming back clear. Which of course was good, but it was also beginning to look like they would never find an answer, and therefore wouldn’t be able to help prevent this happening again.
Already heartbroken, we were all now pretty much scared to death.
Then on Thursday afternoon, they found something they were pretty sure was the cause, an MTHFR gene mutation.

This was a bittersweet moment for us all.
We were relieved the doctors were certain they’d found the culprit, but the fact that it was genetic …well, that wasn’t good.

But it certainly shed light on other things. Bug isn’t the first child in our side of family to suffer a stroke.
The first was my second youngest daughter, now 26.

Here she is, a bridesmaid at her sister’s wedding.

Hers happened while I was pregnant with her, she was born with a large portion of her brain missing, resulting in cerebral palsy, right side hemiplegia and seizures. The neurologists have always said that what happened to her was not genetic and we had a better chance of winning the lottery then this happening again. It looks like they just might be wrong 😦

With this new information, hopefully there’s something that can be done, some form of treatment that will prevent this happening to another family member.
I certainly hope so.

The stroke has left little Bug with right side hemiparesis. He gets frustrated trying to use his right arm, and for the most part now, ignores it and lets it hang at his side or holds it tight up in his neck 😦
He can’t wear shoes (doctors orders) as his heel to toe motion is gone and so he trips up.
The physical therapist at the hospital spent no more than a few minutes with him, and just told my daughter, ‘ let him play with toys, and if he’s not better, or gets worse, in two weeks, call and make another appointment.’
Needless to say, my daughter decided she wouldn’t be making that call.

She consulted Bug’s regular pediatrician and he referred her to a PT clinic that has a pediatric program. Bug and co. are meeting with a new physical and occupational therapists today.
The pediatrician also put in an order for Bugs little brother to have the genetic test.
A step in the right direction 🙂

 I’ve added this to a new category ‘All about Bug’ and will post updates on his progress periodically.

All good thoughts, prayers and crossed fingers for his recovery are much appreciated.

This entry was posted in All about Bug and tagged , , , , , , . Bookmark the permalink.

2 Responses to A heartbreaking end to a happy summer….

  1. Kathy Samuel says:

    Am sending good thoughts and crossed fingers over to you now…


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