Thursday, November 20, 2008

the stroke- who is to blame?

Strokes And Children - The Top Ten Killer You Rarely Read About

I know this article was written earlier this year and maybe some of you have read it but I just found out. I thought it was very sad to read this, I feel Doctors should be able to recognize the symptoms and they should no age doesn't matter.

"Although strokes are among the top ten causes of death in childhood, family members and doctors often are slow to recognize the symptoms"

The guidelines are great however how do you know that they are being read, followed? He states "The guidelines will be the authoritative work on the management of pediatric strokes, and an "invaluable resource and educational tool for years to come," Biller said.

I hope he is true, but if we the family didn't know about stroke let alone an unborn child could have a stroke how do we know the doctors are thinking of it being a possibility?

Strokes can occur at any age -- even before birth. According to conservative estimates, about 3,200 strokes occur each year in youths under age 18. However where is the funding and education in trying to figure out why this is happening, why it is happening so often, and what is being done to stop it.

There is so much research on adult stroke but what about my child, other children who are having a stroke before they are born, shortly after or a few years after what is being done.

I know I am in a feisty mood today but this article isn't agreeing with me and what I am fighting for.

I know it is great that there is more news out about pediatric stroke but you can not put blame on parents not knowing the signs. Before any of us parents that found out our children had a stroke had NO CLUE it was possible. We are paying doctors to know these things.

I am thankful that we know Sean had a stroke and we can do everything in our power to help him. But what can be done to help families find out earlier because starting therapy early is key.

We started therapy at 6 months but we started because he wasn't doing things a 6 month old even though adjusted 4 months could do. We should have been sent for an MRI at that point he was not lifting his head, pushing up on his arms, and favored one side.

What we were told was he was a preemie, he needs more time to catch up, and oh he is going to be a lefty. Sean qualified for therapy thank GOD because with out we would not be where we are today.

Knowing what I know now I don't want anyone to have to go through what we are going through. How could he have gone two years of his life with out knowing he suffered a stroke?

Are doctors not wanting to think stroke? Or is it because the medical insurance is so against any type of medical procedure with out knowing why you need it. Who should the blame go to?

I personally feel it is the world we are in. I always followed my gut and mommy instinct of something was going on, I just thought it was because he was a preemie because that was what I always heard from everyone and it made sense for a little while since he did do all milestones even though they were all late. But I think to myself how could I have not done more so I could have found out earlier? Is this my fault? Is it the doctors for not being educated enough for us to have found out sooner?

Being a first time mom you always worry or at least I did, but people made me feel I was worrying to much maybe I did on some stuff but this is my child and when you feel something is wrong you need to push. I know it is anything that I caused to happen but it makes you wonder why? why did it happen to Sean? why is it happening so much? what is causing it?

Most people still don't know that you can have a stroke at any age and even before you are born because as we tell Sean's story people are still in shock. Something needs to be done anyone else want to figure out what and do it together?


Julie said...

i am not even going to read that article because i'm already panic attacking like crazy. haha the littlest things send me into such a fit of anger, and by what you're saying...

Meghan was *in the hospital* when she had her stroke. She was there for a "stomach virus", which we later found out could have been a symptom of her venous infarct. (Most strokes are arterial) They weren't even THINKING stroke. When Meghans right side wasn't working? Medical professionals were not even thinking stroke.
Until the next day. Its my mom who was telling docs that things weren't right. They pushed her off blablabla then the next morning, the attending doc took one look at her and did NOT like what he saw. (See why I'm not a fan of residents?)

SO the bull that parents/caretakers don't know the signs? grrrrr don't even get me started. heh.

Ellen said...

WELL SAID. It is incredible how many people are unaware about pediatric stroke. And it is mind-blogging to think any blame could be placed on parents not knowing the signs. Before I had my son, I had NO idea babies even had strokes. If you are first-time parents, it's especially impossible to realize a child is not developing typically.

We were "lucky," I guess, since we new at birth that Max was at risk for all sorts of problems--you name it, they told us he'd had it. I try to raise awareness with my blog, as you are doing. And by being very open about what happened to Max.

Christine said...

Hi Erin,

Thanks for your post. I hope Sean's eye exam goes well :)

Trish said...

wow - I knew anyone could have strokes but I didn't think too much about children and unborn babies having them.

Thanks for sharing the message and I wish Sean all the strength in the world to meet the challenges and to rise up show the world just how able he can be.

He is a lucky boy to have such a
special and instinctive mum.

Amanda said...

Wow, I had no idea this could happen. I'm so sorry for what y'all have had to go through. You are doing a great thing by raising awareness! Sean is beautiful and he is obviously quite a fighter!

Elea's Mommy said...

My daughter also had a storke before birth but due to the fact that we were high risk for other reasons from the beginning I was having ultrasounds 2 times a week and we actually saw the hole in her brain at 30 weeks... we aren't sure exactly when it happened because there was no evidence of it before that ultrasound. She is now 2 and doing well.. we had to fight from the very beginning for her though,,, fight to get her into therapy and all that.