Zak in the hospital with Status Epilepticus
Epilepsy Three Years Later
by Josh Bauman
by Josh Bauman
July 9, 2008 started as any typical day in our house. I went to work and my wife Annette was going to take Jackson, then three, to see a movie. My mom came over to babysit Kade, then five months old. My desk phone at work rang, it was my home phone number. I answered the phone to hear my mom telling me something I did not expect to hear: "I think Kade just had a seizure."
by Vanessa Hernandez
As I sit back to reflect and write this article, I can't help but wonder about all the signs I missed. It's amazing sometimes how you can have such a wealth of knowledge and when it comes time to use it on your own child you become incoherent. I have always been the type of person to research things in order to have the information needed to make decisions. When Isabel first started to show signs at one week old that something wasn't right, I did my research. Even armed with all my knowledge, I couldn't save my little girl from the frightening experience she was about to have. My hope is that through her story we can somehow help other families.
As I sit back to reflect and write this article, I can't help but wonder about all the signs I missed. It's amazing sometimes how you can have such a wealth of knowledge and when it comes time to use it on your own child you become incoherent. I have always been the type of person to research things in order to have the information needed to make decisions. When Isabel first started to show signs at one week old that something wasn't right, I did my research. Even armed with all my knowledge, I couldn't save my little girl from the frightening experience she was about to have. My hope is that through her story we can somehow help other families.
by Nicole Swiers
When I became pregnant with my third child I knew by my second trimester that something was wrong. It was a high-risk pregnancy due to me having some kidney issues, but my ultrasounds were always fine, so it didn't make sense that something didn't feel right to me. Emeric was born at 38 weeks and was a healthy baby. We left the hospital in two days and everything seemed fine. Little did I know that seizures would soon become part of his life.
When I became pregnant with my third child I knew by my second trimester that something was wrong. It was a high-risk pregnancy due to me having some kidney issues, but my ultrasounds were always fine, so it didn't make sense that something didn't feel right to me. Emeric was born at 38 weeks and was a healthy baby. We left the hospital in two days and everything seemed fine. Little did I know that seizures would soon become part of his life.
Focus: Seizures
MAD Mama: The Modified Atkins Diet for Seizures
by Milena Casey
Turn fear into anger. That is something that my husband always said whenever I got scared hearing all the horrible things the doctor told me about my daughter's prognosis. It took me a while to understand what he meant. But once I got it, I used it. Fear is a negative feeling that makes you crawl into a ball and not move. Anger is a feeling that can be turned into a positive one, using its energy to protect yourself.
It's anger that helped me find MAD, the Modified Atkins Diet for seizures.
The Emotional Toll of Seizures
by Dawn Klepinger
I am often asked how I handle my son's seizure disorder, what I do while he is seizing, and how I deal with all of the emotions involved in having a child with difficult to control seizures. Most of the time I really don't know how I handle it all. The truth is, I don't have a choice, and I have to somehow be able to balance the emotional roller coaster the seizure disorder takes us on daily, while being the best mom, caregiver, and advocate I can for my son.
by Dawn Klepinger
I am often asked how I handle my son's seizure disorder, what I do while he is seizing, and how I deal with all of the emotions involved in having a child with difficult to control seizures. Most of the time I really don't know how I handle it all. The truth is, I don't have a choice, and I have to somehow be able to balance the emotional roller coaster the seizure disorder takes us on daily, while being the best mom, caregiver, and advocate I can for my son.
This is a story about Hope. Mayci is my second daughter and Marli is her older sister. We had the hope of completing our family with two beautiful daughters and a life of "normalcy." A life of sisters fighting and picking on each other and sharing each other's clothes. We soon realized that Mayci would not be the typical sister that we had thought we would have.
(Read More)by Lori Cutillo
By the time your child with multiple disabilities is nine years old, you have gone to a lot of doctors' appointments, and filled out a lot of medical forms. Almost always, there is a question posed: "Is there a history of seizures?" I had always responded confidently (and thankfully) in the negative. Unfortunately, this answer would soon change.
(Read More)Specialty Article
Having a child who requires nutritional support, such as a child on enteral feeds, parenteral nutrition, or a specialized diet, can be quite difficult. Often parents find they need to educate themselves. Luckily, a number of organizations and companies are now providing webinars and online educational modules to help make this process a little bit easier. A few of the most common ones are listed below.
Feature Article
by Erin
I have a love/hate relationship with labels. I'm not talking about food labels (although this relationship would apply to them as well), but medical or educational labels placed on my daughter. Although it irks me when labels limit perceptions of her functioning, I do appreciate that labels can simultaneously help her obtain necessary services that improve her quality of life or encourage her to reach her potential.