Friday, October 8, 2010

Infantile Spasms Awareness Week

Last year marked the first year of Infantile Spasms Awareness. Since it was just up and going, not much was done to promote it. I'm not sure much more is being done this year either. So I have taken it upon myself to post a bit about it to Kylie's blog.

First, I wanted to give you all the link to the site that started Infantile Spasms Awareness. Here you will find a few different tabs to click on and they will provide you with some basic information on what it is, the diagnosis, and treatment, and so forth.

You will see a video on what Infantile Spasms look like, but I wanted to let you all know that Kylie's seizures didn't start out like that. They were so subtle, that I thought I was just being paranoid about the subtle movements I was seeing. I wish that's all it was, a new mommy paranoia and not my super mommy instinct that lead to a diagnosis as devastating as Infantile Spasms.

Here is a video of what Kylie's seizures looked like in the beginning. Actually they were more subtle than this, but the initial video (taken with my cell phone) of that is hard to depict the movements.

It looked like she was shrugging her shoulders just slightly, and her hands would go up a bit. Also I noticed her eyes were watery, so much that it always ran out of her right eye and down her face. It would stop her for a second or two, and then she would continue what she was doing, and then it would be there again, and this would repeat itself every couple of seconds for up to 10-12 minutes.

Every little movement that looked so benign, was a seizure. These are completely separate from all other seizures that you may have heard of. This is the ONLY form of epilepsy that is associated with developmental delay and cognitive impairment. They still do not know if it is the diagnosis of Infantile Spasms or the actual seizures that cause these issues. I believe it is the seizures, just from my limited experience with this and other stories I have followed. It seems as though the children that have had seizures longer, have had the greater difficulty.

It is very important to know that the quicker the diagnosis and treatment, the better the outcome. Some cases of Infantile Spasms have a cause ( brain abnormalities that are revealed in an MRI), while others have no cause to be found. That would be the case with cause.

We were told that 1 in 5,000 kids are diagnosed with Infantile Spasms. So it is definitely rare, but when Kylie was diagnosed, her neurologist told us they had seen a flurry of kids come through with this. There has to be something going on somewhere, that has led to this.

I urge all of you with children to ask your child's pediatrician if they know what Infantile Spasms is (what the signs are, what to look for), and if they have ever diagnosed a child with it. I'd be interested to know how they respond.

So at your child's next well check-up or sick visit. Please ask, and share with friends that have infants. You could help save a child from going through more than ever should have to endure with this diagnosis.

When we first started researching what Infantile Spasms was, we were devastated and thought everything was over for us and the life we dreamed of for our daughter. There is little research on the topic, and what has been done can be very scary for those digging for information. That is why it is SO very important to know what this is and to act quickly and never back down when you feel something isn't quite right with your child.

Kylie has been one of the lucky ones, she is doing more than what we ever expected her to do. More than what many kids have done with this diagnosis. She is simply amazing and just shines brighter and brighter all the time.

She is everything to us! Let your child shine just as bright by protecting them and making yourself aware of what Infantile Spasms is.

In honor of Kylie and the many other children that have endured this horrible thing known as Infantile Spasms, please share this with all you know during Infantile Spasms Awareness Week and every day there after.

Infantile Spasms Awareness Week is next week October 11-17th.

One more thing before I let you go. We celebrated Purple Day in honor of all those with Epilepsy, so I am asking that you wear purple for those with Infantile Spasms.
If you have time to take a pic, please send it to me ( and I will do a blog post of all those in support of Infantile Spasms Awareness.

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