Holding On to Hope, Part 2: Our Journey with Childhood Epilepsy

One day a friend at church asked about DeSean. I honestly shared what we were going through with him. “He is over-medicated and hard to manage. He has about 100 seizures per day. He is really struggling. I feel terrible. No four year old should have to be drugged like this.” She asked me if I had ever thought of changing his diet. I told her about asking the doctor if their was any chance for a more natural approach or dietary changes. I shared his discouraging words.

Next, she asked me if I had ever seen the movie First Do No Harm with Meryl Streep. A movie about a little boy with epilepsy. I had not. She encouraged me to see it. She felt like our story and the story in the movie were very similar. She said this mom changed her sons diet against doctors orders and his seizures stopped!

I left church and went to Blockbuster. They didn’t carry the movie. I left there and went to the local Wiki Wiki video store. They didn’t carry it either. Netflix had it but only on DVD. I couldn’t wait. I went online to buy it. And i was distracted and amazed as I found so much information on the ketogenic diet. I got lost in information…and my research began.

I found the movie online for purchase. It had been made for TV. Meryl Streep as the lead actress. Really? In a TV movie? I thought, that can’t be right…. I searched further and found links to The Charlie Foundation website. What an amazing resource! There were testimonies of children who had been on this diet. Not only did it help control their seizures, it CURED their epilepsy. Cured!

We made another appointment with our sons neurologist. My husband took him this time. The doctor suggested adding two new prescriptions, and having more genetic testing done to look at the possibility of two different syndromes. Lastly, he mentioned that DeSean may be a candidate for the Ketogenic Diet. He wondered if we had ever heard of it?!?! Of course we had. My husband reminded him that I had spoken to him about the diet a year ago. He did not recall. However, it seemed that now that it was his idea, he was willing to discuss it further. And as he suggested the diet, he contradicted himself. He spoke of it’s difficulty and how it doesn’t often work. He spoke of how hard it is for a family to carry it out. And as he finished his speech about how it will never work, my husband asked what we do to follow though and make it happen. Hope.

I reasearched and poured over all this new found information. Continued researching. Early mornings and late nights, gathering information. I dove in head first. I emailed The Charlie Foundation to share a little of our story and ask for advice.

Later that day, the phone rang. It was Jim Abrahams, founder of The Charlie Foundation. This phone call became a life-line for us. It was exactly what we needed to fight for our son with new fervor and confidence. When I told him what our doctor said and how discouraged we were, he turned that around for us. “You can do this. It is difficult, but it is doable. Your son will get better.”

A few days later we received a package from The Charlie Foundation. Jim Abrahams had sent us the movie First Do No Harm.

As I watched this movie, waves of emotion surged through my body. I wept. I was angry. I was overwhelmed by the audacity of the doctors not giving the diet a chance. I was sad for the losses this family experienced. I was dumbfounded at how the medical community easily suggested surgeries, and debilitating prescription drugs before they ever even suggested dietary changes. I reminded myself that this was a movie and the story was fictionalized. And then I thought….it is fiction. But the scenarios are real. This could be any family dealing with childhood epilepsy. This could be any team of doctors with a narrow medical mindset. This could be any parents desperation to see her child healed and free from drugs and medical interventions that don’t work. I felt deep sadness. Sadness for my son. Sadness for us. Sadness that we could have tried a diet a few years ago and it could have cured our son. Sadness that my precious boy has had to go through so much. I asked God over and over again why he had allowed our precious boy to suffer with this disorder for so long. I had fasted, and prayed, believed and prayed more. I knew God could heal. I knew He could change everything in a moment. I had experienced His healing touch, His mighty power, His love. This was hard for me to swallow. Why wasn’t He healing our son?

We pursued the Ketogenic Diet. There was so much to coordinate. There were labs to be done, a hospitalization to be scheduled, a dietician to coordinate with, a pediatrician to make a referral, insurance needed to pre-authorize a hospital stay. Many different pieces needed to be coordinated for everything to flow together for this to happen. We set a date for his hospitalization.

We started making calls. We were ready. Big changes were on the horizon for our family. We had more hope than we had in years. Hope. We were holding on to God, to each other, and to the hope we had that our son would finally experience healing.

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About jaw123456

I am a forty-something year old woman with a thousand interests. I am married to an incredible man who holds my heart. Living wholesome lives and training our children to lead lives that are worthy of the calling that God has for them is our hearts desire. Some of my interests include faith, family, adoption, homeschooling, whole and wholesome foods, cooking, sewing and living simply.
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