My Name is Faith and I Have Epilepsy

Some background on Faith.  She is 2 years old and is a living miracle, literally.  Her birth was traumatic, after aspirating meconium and having a true knot in her cord.  She suffered a lack of oxygen and started going into seizures immediately.  She spent 2 months in the hospital, we were encouraged to pull the plug on three occasions.  Thankfully, we had the hope and support to continue her care and 2 years later she is only slightly developmentally delayed. 

She did sustain a brain injury during this time affecting the bilateral frontal, posterial temporal and occipital lobes.  We are learning more and more about her every day.  She has been diagnosed with epilepsy and Global Develpmental Delay.

This is the book I would like to publish...I am figuring this all out as I go. I am constantly explaining to people, as we leave Faith with various caregivers and family members, what they should do in the case of a seizure. It gets tiring after a while and I thought, if I had something I could just give to them and they can read it themselves, it would be easier all around. And maybe not so scary for them!! This is the result. The last page of the book is left blank for parents to answer those questions individually for their child, because they are all different!!

Each paragraph is a new page. I am also contacting some websites to get permission to add facts from them in the book as well.

Let me know what you think!

My name is Faith, and I am 2 years old. I started having seizures when I was only 1 and now I have epilepsy.

Having epilepsy doesn’t make me any different then anyone else. I can still talk, and walk and play and run. I love giving hugs and kisses and I love to snuggle with everyone. Just like some of you.

My seizures are always different. Sometimes I have one and you wouldn’t even notice! I will just stare off in one direction.

We know which side of my brain is missing the connection with each seizure…do you know how? The other side of my body is affected!! It sounds so weird, but I will stare to the left or my left side of the body will move when the right side of my brain is not making the right connection.

The last big seizure I had, my tongue kept sticking out of my mouth. I couldn’t control it at all. My parents were pretty scared. I ended up starting a medication to help me not have so many seizures. I still have a few small ones. Like the staring ones, or sometimes I twitch a little bit.

Sometimes mom and dad have to call 911 to come and help, because my face may start to turn blue. One time I had an oxygen mask on my face while they drove me to the hospital.

Now the doctor decided that my parents should have a special pill that I can take if my seizure is longer then 5 minutes, or if I start to have them in a row. The pill is supposed to stop the seizure from happening.

So, I have epilepsy. If you ever see me having a seizure, just make sure I am on my side, so I don’t choke on my drool. Just let me finish and then I will be really tired. I love to sleep right after and it is usually for a very long time. I just get so tired!!

Remember, I am not different from anyone else. I just take medication, and as long as people know that I have epilepsy, and they know what to do, it is not that bad!!


My Childs Seizure Protocol




Childs Name and Birthdate




Diagnosis




Types of Seizures Typically Seen




Potential Causes of Seizures




Medications Prescribed




Seizure Protocol Medication and When to Use It




Who and When to Call For Help




After the Seizure