It’s always great to speak to others about life with Epilepsy. As doctors continue to reiterate, everyone’s experience is so different and I’m convinced that we all gain knowledge and form some great friendships (both real-time and virtual) if we share our stories and swap information…in a positive way.
Paulette George is a wife, mother and author. She penned the book, Good Morning Beautiful, about her daughter Christina’s journey with Epilepsy and Autism. Suffering more than 100 seizures each day, Paulette and her husband eventually discovered the Ketogenic Diet and they began implementing the diet for Christina. Their journey is long and courageous, much like all of you. I spoke to Paulette a few days ago…
Brainthunders: Explain exactly why you wrote the book and what you hope to teach or show others.
To be honest, I first began writing our story in an effort to show how the heatlhcare system seemed to fail to meet the needs of people with seizures and autism by not providing all of the options for treatment. At the time, the book was titled, Rock A Bye Heart. As our story unfolded, I realized it was advocacy and the team approach to our daughter’s care that enabled us to obtain seizure freedom. The magical mix of a doctor partnering with parents or patients can make all the difference. This was much richer than sharing the negative side of things. The book’s new title, Good Morning Beautiful, reflects a magical time when all seemed lost, but through it all our daughter began babbling the chorus to the song, “Good Morning Beautiful” at the age of 4 1/2. it was a huge milestone!
Brainthunders: Can parents of children with Epilepsy truly teach other parents about how to manage their lives? If so, what are some lessons you can provide?
Absolutely! I believe that history is one of our best teachers, and in this instance parents who have already been down the same road can share what worked for them and they can provide life-saving and changing tips. When our daughter was having more than 100 seizures each day, I found a woman on a ketogenic diet mailing list whose own daughter had already been on the diet. This other mother gave me encouragement to go on, tips on how to manage the diet and when the emotions were overwhelming and it seemed too hard to forge ahead, her support and encouragement helped me to hang on to hope. Some of the lessons I can share…
-First and the most important in regard to medical care is to find a doctor willing to work with you. The greatest success is always found with a ‘team’ approach to your child’s care.
-Having another parent, who also had a child like mine, to share with, took some of the load off.
-No one knows my child better than her dad or me (it’s that God-given intuition), and when my gut told me something, I listened, even when others didn’t.
-I learned that special education is a gift for my child and not a curse, and trust me on this, if they offer it, take it. Free help never hurt anyone.
-The next is my own advice and I’m not so good at following, but hope you (do): Take time to get away. Even if it’s only an hour once a week. Find someone you can trust and who can handle an emergency with your child (just in case) and take time to breathe. If nothing else, sit under a tree and take in a view. Have lunch with your other half, or curl up in a bookstore with a cup of coffee and a good read.
-Last and so important: Pray! Martin Luther King Jr. once said, “Faith is taking the first step, even when you don’t see the whole staircase.”
Brainthunders: Any ketogenic diet thoughts? It seems so extreme to some people. What can you share with others about how it changed your life and your daughter’s life?
The ketogenic diet is one of my favorite things to chat about because it works. It has since the 1920′s when it was first introduced by the Mayo Clinic. However, with the introduction of anti-seizure meds in the 1950′s, the diet became almost prehistoric in a sense. Today, there are 3 million people suffering from epilepsy (in the U.S.), every year, 200,000 new cases are reported. Of those, 30 to 40 percent do not respond to medication. That is a huge number of children and adults who suffer from seizures with no relief. After our daughter tried every anti-seizure drug available, we traveled 1,200 miles to put her on the diet. And, when we did, it was as though a miracle happened before our eyes. She became seizure-free within days and precious development time was saved.
The diet did seem extreme at first, but after we got into a routine, it was easy to manage and Christina loved her meals. My husband would help; we weighed and measured each one according to the dietician’s directions. Our story doesn’t end here, but the ketogenic diet saved our daughter Christina’s life. Without it, she would not be the thriving, healthy 13-year-old she is today.
If you are considering the diet for your child, I would suggest finding a doctor and dietician who know the diet well. Please know that placing your child on the diet may be something you would have to request, and perhaps even push for as not all neurologists know the diet or offer it as a treatment option.
Brainthunders: If you can pass along one sentence, some words of wisdom, about living life with Epilepsy, what would it be?
It would be this…Don’t give up! Thomas Edison once said, “The greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.”
You can learn more about Paulette George and her book, Good Morning Beautiful by visiting her website. You can also listen to the song, “Good Morning Beautiful” by Steve Holy.
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