Monday, September 1, 2014

Epilepsy Families: Mason's Journey

Happy Labor Day, friends!!

We took a last-week-of-Summer-vacation break from the blog, last week. But, here we are again!

We are continuing our look into what Epilepsy is like for other families and kids.

This all started for us 2.5 years ago (officially). It's been a crazy ride, as many of you know. Tomorrow, our Jedi starts SECOND GRADE. Hard to imagine, right? This little man who was told he would have to repeat First grade, will be starting another big year. Per his request, we are homeschooling again. He has been so eager! Plus, his younger brother will also be homeschooled, per his request as well (E's, not Renn's). I'm going to be a busy Momma! But, we can't wait. And we are thankful for the opportunity.

Now, this is Brandi. She is mom to Mason, and absolutely scrumptious little man!! She wasn't sure how to write everything down, so we did this in a question/answer format. Please welcome Brandi!


Hi! And welcome to The Brain of a Jedi!!

Please introduce yourself, and tell us your child’s name and age:

My name is Brandi and my son's name is Mason.  He will be 4 years old in two weeks and starting preschool next week.

How old was your child when he/she was diagnosed?

He was diagnosed with absence seizures when he was 2 years old.  When he was about 16 months, I noticed that sometimes his eyes would roll back and to the side randomly. And despite other friends and family members telling me that it was nothing- that I was just being paranoid, I knew that something was wrong.  One day he fell down the steps when his eyes rolled back and I knew it was time to call the doctor. They saw us the next day and ordered an EEG so we took him to UVA Hospital.  The first EEG was complete torture for him as I am sure they are for all little ones.  The doctor called me within a couple days and confirmed my fear that it was indeed abnormal brain activity which they would diagnose as Epilepsy. Since then, he has had another outpatient EEG, inpatient 3-day EEG, MRI, so many blood and urine tests that I can't count, and genetic testing. 

 Have you been lucky enough to find a medication that has kept seizure activity at bay? 
If so, which one(s)? Which ones have you tried in all? 

We have tried Levocarnitine, Keppra, Lamictal, Zonisimide.  Currently he is taking Levocarnitine and Llamical and he still experiences daily seizures.  It is questionable if they are as frequent as they were in February when he had his inpatient EEG, as he was having at least 20+ day then.  

Are there any other methods you guys are willing to/are having to try to get rid of seizures? (ie VNS, CBD oil, Lobectomy/Resection, or Ketogenic diet)

At this point we are unsure about trying other methods to control his seizures besides medication.  The most challenging part is getting him to take his medication twice a day.  There is a lot of begging and making deals to get it done.
Caring for someone with Epilepsy can be difficult and daunting at times. Do you have a lot of support in your area? What do you do to stay positive? 

I don't have a big support group of people that understand Epilepsy so if I have any questions I turn to this Moms of Epilepsy FB page because really my friends and family members just don't get it and feel that my husband and I just spoil my son entirely too much. 

What is the most challenging part about being a mother to a child who has Epilepsy? 

It is extremely difficult to watch him suffer and know that it isn't fair that he has to take his medication and have Epilepsy.  Also, I worry about him having a Grand-Mal seizure when I'm not there. 

If you could teach this world ONE thing about Epilepsy, what would you teach it?

If I could teach one thing about Epilepsy to people it would be to change the stereotype and get rid of the stigma.  People automatically assume that if [someone has] Epilepsy they also have an intellectual disability and this just isn't the case most of the time.  

Thank you so much for joining us, today! We love educating about this wretched condition, and are thrilled you have shared your journey with us!