Military Special Needs Network

Proudly Supporting all Military Families with a Special Needs Dependent

Epilepsy Awareness

This month’s Diagnosis Spotlight is written by Kim Robinson. Kim is an amazing woman. Not only is she an Army wife and special needs mom, she has become licensed as a Child Passenger Safety Technician. She is “…passionate about educating parents and caregivers on the importance of correctly using child restraints.” Kim volunteers her time to educate parents on seat safety at events around her community.

Happy Epilepsy Awareness Month! Epilepsy is very near and dear to my heart, and sadly, doesn’t get the attention it deserves. So when I was asked to write about our personal experiences with Epilepsy, I was thrilled. I love to tell people our story, to help people become aware of what Epilepsy is, what Epilepsy can look like, and who Epilepsy can affect.

Epilepsy affects more than 3 million Americans, and new research and statistics are showing that 1 in 26 people will develop Epilepsy, or have a seizure in their lifetime. Before my daughters diagnosis, I knew nothing. I wish I had.

Emma was 3 years old when she was diagnosed. It is the hypothesis of her Neurologist that she had been having seizures for at least a year, undetected. I noticed something was off, but was blown off by several pediatricians, and Emergency room Doctors. I was told she was clumsy, and that she day dreamed a lot. I never knew that seizures could look like someone is just staring into space, or they would just fall to the ground, for no reason, and get right back up. The drop seizures would leave her with busted teeth and lips, bumps on the head, and more cuts and scrapes than I can count.

There are over ten types of seizures, and they can look different in every single person that has Epilepsy. In Emma, she spaces out, and is not responsive to noise, or touch; these are called Absence Seizures. She also has Atonic, or Drop seizures, these look like she just fell to the ground, or her head will just nod down, and then back up.

There is no cure for Epilepsy. There are medications, diets, and surgeries that are used to try and control the seizures, but there is no cure. 70% of Epilepsy patients have little to no control of their seizures. Emma is one of the lucky ones. After failing 6 medications, we found one that controls her seizures, and she has been seizure free for 8 months. That doesn’t mean that our life is easy. We have to modify nearly everything that we do, to avoid triggers, and avoid a seizure. If the temperature outside is above 75-80, we can’t go outside. Heat is Emma’s number one trigger. We can’t go to crowded places, places that are loud, and we can’t alter bedtimes. Exhaustion, loud noises, and being overwhelmed are more triggers. A simple fever of 100 or higher is a call to the doctor, and then usually a trip to the Emergency Room. Seizures start at about 99.9-100 degrees. Any fever at all means staying home from school.

Epilepsy has changed our life, and given us a new normal. It has caused a strain in my husband and I’s marriage, and it’s changed the way we look at everything. Outings need to be carefully planned, and there is a lot more to think about. It’s harder maintaining friendships, for us, and for Emma. People that don’t understand why we might have to back out at the last minute, or why we can’t do something because of Emma’s limits. It’s hard for Emma to make friends, when her after school time is composed of Therapy, and who can’t understand why some days Emma can’t go outside and play on the play ground. We just take things one day at a time, and try to count our blessings, because we are one of the lucky ones.

Comments, discussion and insight always welcome!

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