A Week Dedicated to the REAL Heroes

This week is Thanksgiving week.  A week that we are constantly reminded to do what we should do everyday of our lives…be thankful for everything we have.  I figure with it also coincentally being the last week of Epilepsy Awareness Month, it’s only appropriate to give the people who I know deserve the most “thanks” in the epilepsy world, but get it so little, to be recognized and have the chance to share their stories.  These people are the parents of children living with epilepsy.  It wasn’t until this year that I found out how scared my parents have been most of my life, but they never let me know.  They were scared that I would get hurt having a seizure.  They were scared that kids would hurt my feelings at school.  They were scared at what my seizures could develop into.  The possibilities of disaster that were unknown to me, were front and center in their heads, but they were never brought to my attention as they didn’t want me to think that I was different or that I couldn’t achieve whatever I wanted.  They are my heroes!

This week I will be sharing a few guest posts from parents who are willing to tell their and their child’s stories to us.  The strength and courage of these individuals blows my mind.  Thank you to you all… thank you to all of the mom’s and dad’s out there that let their children believe that they can be a doctor, an astronaut, or superman.  Thank you to the mom’s and dad’s that let their kids believe that they are strong, they are resilient and they are here for a reason.  Thank you to all the mom’s and dad’s out there that are their children’s hero… even if they may never tell you… you are!

 

“Sam is My Hero”

“We were so excited to meet Jenny LaBaw when we heard about her and her run across Colorado to raise awareness for Epilepsy. Her story is a success story and one of perseverance and determination. She is a role model for so many, but especially for our son, Sam.

Sam    IMG_1214

Sam started to have seizures when he was 19 months old. They were short disturbances during the day and in his sleep. We were referred to a pediatric neurologist at a hospital in Denver, a three hour drive from our home. We sat in the neurologist’s office and learned all about seizures and epilepsy in a short period of time.  number 1 Scared and anxious, we agreed to all the recommended testing and hoped we’d have a plan to stop the seizures. After an MRI and multi-day EEG there was no evidence of an abnormality so Sam was prescribed medication and we were told he would most likely outgrow the seizures. Sam was still our sweet, happy, active boy and the seizures rarely slowed him down.  

Unfortunately, the seizures did not stop; in fact they got longer and more frequent. After three drugs failed to stop the seizures, Sam had another EEG with an epileptologist in Denver and Sam was diagnosed with right frontal lobe epilepsy and epileptic spasms. number 4We were told he may have significant developmental delays and that the epileptic spasms would be very difficult to treat. We would have to make decisions about adding medication(s) and balancing the side effects with his quality of life. It was also recommended that we start speech and OT therapies to help his development. We were then referred to Children’s Hospital in Denver for his future treatment. This was a very challenging time for us. The uncontrolled seizures were taking a toll on Sam. I was also working full time and being away from Sam was very tough. We were very fortunate that Sam was in a quality day care program and they cared for him like he was their own. sam and charlie hospital

It took another MRI, PET scan, two more medications, and a few multi-day EEG stays at Children’s to try to get Sam’s seizures under control. With the right medication, we eventually had a 2 year break from the seizures under the care of an amazing pediatric neurologist, Dr. Laoprasert. Dr. L was the first doctor that noticed a small malformation in Sam’s brain in his right frontal lobe. Now his diagnosis became more specific, cortical dysplasia in the right frontal lobe. Dr. L was also the first doctor that told us, “Sam is doing well and he will continue to do well.” He helped us realize that epilepsy is one part of Sam, not all of Sam. But, he also warned us that with cortical dysplasia the seizures could come back. Even though we still dealt with some side effects/issues from Sam’s medication, Sam was doing really well. He was like any other kid. He led an active life, even learning to downhill ski and taking swim lessons (Two things I didn’t think he could ever do when the seizures were at their worst.)

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The seizures slowly started to come back less than a year ago. There were a few during the day when he wasn’t feeling well, but mainly they were in his sleep. We increased his medication hoping his recent growth spurt was to blame. When we reached the maximum dose he could take, we added a second medication. This second medication seems to be working and Sam’s night time seizures are decreasing. We are hoping we can control Sam’s seizures with medication. The next option is brain surgery to try to remove the part of his brain causing the seizures.
IMG_0445This Fall, Sam started kindergarten. He has an IEP (Individual Education Plan) in school to help with his learning challenges. He has trouble with his attention, short term memory, speech, and handwriting. At this point he loves school and we hope to keep him successful and happy in school. 

After battling epilepsy for 4 years now, we know what a roller-coaster this can be. There are some really great times and there are some really heart-breaking moments. It is very tough to watch your child suffer, or to watch them deal with challenges when all you want is for them to enjoy being a kid. Fighting insurance and drug companies, balancing doctor’s appointment and therapies while working full time can spread you thin. But, we want Sam to have every opportunity, to experience all that life has to offer, to not hold him back, and to encourage him to always do his best. We will advocate for him and keep him safe. We will educate and empower him to overcome this challenge.

Sam is my hero. Through him I have discovered more patience and strength than I ever knew existed. There are so many things we can’t control in life, but we have control in how we handle tough situations. We choose hope. We choose to raise Sam with the strength that will Move Mountains.”  ~Megan

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4 thoughts on “A Week Dedicated to the REAL Heroes

  1. I really liked this posting. I agree with what you write about dealing with insurance/drug companies and the time it requires. I remember at one point in my life when I was having to do this that it felt as if I had another full-time job. It’s difficult to sometimes handle this hurdle, which could be so much easier, when we are confronting something beyond our control that is truly a life challenge. I wish you all well. Sam seems to be such an incredible kid 🙂

    Like

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