On…Off…On Again! Part 3: Our Journey with Childhood Epilepsy

Over the coming weeks there was much to prepare for. I felt as though I had to learn as much as possible. I needed to have a clean pantry rid of refined high carb foods. I needed a stocked pantry full of ketogenic foods. I needed to equip my kitchen with necessary tools. I was ready for the challenge. A little nervous about all the changes, but ready.

I needed to equip myself. I started reading everything I could get my hands on. Thanks to Kindle, this was easy. Jim Abrahams suggested a couple books to start with and sent me articles to read. The Charlie Foundation Website continued to be a wonderful source of information and encouragement to me.

Praying, reading, thinking, journaling. I was wanting as much information as possible, so that our son would be successful on the Ketogenic Diet and we would see his seizures stop.

I knew this diet had to be initiated while my son was in the hospital. There were a few risks. The biggest risk was that a child my become acidodic with this diet change. That would require close monitoring. I also knew that we should begin to cut out carbohydrates now so that he did not have such a shock when he could no longer have them. We live in Hawaii. Rice is a staple, as are many fresh fruits and purple sweet potatoes, haupia, malasadas, mochi. None of this would be a part of his diet anymore. He had some huge adjustments to make. And unfortunately, I did not think he would be able to comprehend why we would be changing his diet so drastically.

We were asked to give some possible dates to the neurologist and they would in turn coordinate with the dietitian. I assumed arrangements were made with the hospital. I contacted the dietician at the request of the neurologist, and she had a list of questions for me about our son. She wanted to know what types of foods he liked so she could begin building a possible menu for him. She told us what labs needed to be done and we took our son in for a full array of blood work to make sure he was ready for this major life change. So far so good. As the dietician got results back she said everything was looking good. Whew! It felt like two hurdles had been cleared…we had hospitalization dates and positive lab results. We are ON!

Our pediatricians office worked hard to coordinate the hospital stay. The neurologists office did not help to make the referral. They did not know the codes for the insurance to pre-authorize, and they weren’t willing to figure it out. Our pediatricians office called the insurance company and they claimed they did not know the appropriate codes either – but they somehow knew that the ones originally submitted by our pediatrician were incorrect. Finally, the nurse was able to reach another doctors office on Maui who had sent a child to Oahu to have the diet initiated. The office on Maui shared with our pediatrician here on the Big Island the codes they thought they used. The insurance rejected the codes again, stating these codes were for out-patient, and this pre-authorization request was for in-patient. WHAT!? Doesn’t anyone know this? Not the dietician? Not the neurologist? Not the pediatrician? Not the insurance company? Seriously? No one knows how to code this? Without insurance pre-approval we would not be scheduled for a hospital stay. Looks like we are OFF…

The nurse from our pediatricians office called the insurance company again. She spoke with a supervisor who said they would approve the stay, and that whatever they were billed they would pay. However, they had not put this in writing. A verbal authorization? Skeptical, the nurse called me. She was a little leery, but wanted to let me know what they had said, and she suggested that I follow up with them to clarify about the stay. I did. I got the run around. The first person told me it was not approved. The second person told me that it may be approved because she found some notes on the computer. I was placed on hold so she could read the notes and give me an informed answer. She spoke to a third person, a supervisor, who supposedly said that they understood these were special circumstances and they would see to it that it would get approved. ON again…we hope.

Because this was a big life change for us, we wanted to go as a family. We are a unit and we do well together. We wanted to go as a family. We felt that DeSean would do best with all of us around. We bought our tickets. Friends and family donated air miles and we cashed in everything we had to get there. A generous family on Oahu allowed us to stay in their vacation rental free of charge. Amazing. My cousins helped me reserve a rental car that would fit our big family. Okay. This is really going to happen. Plans are in place, and tickets have been purchased. We are ON!

Nine days before our departure, the dietitian texted me and said that the neurologist cancelled our sons hospitalization stating that we would need to postpone. Um, no! Why the sudden change? All the arrangements have been made. Our son needs this. We are ready. Plane tickets have been purchased. All his labs done. All arrangements have been made for our entire family. The insurance is finally on board. Way too much work has gone into this to turn back now. I pressed to know why? Texting back as fast as my fingers could go, I could feel heat building in my chest and making its way to my eyes. I wanted to cry. I stopped texting and called the dietitian instead. She explained that the neurologist was concerned because when he saw the labs, DeSean was already in ketosis. The level of ketones in his blood made the neurologist second guess if he should be on the ketogenic diet. I thought to myself, of course he has some ketosis, we changed his diet and cut out all major carbs. Couldn’t that be the answer? She wasn’t sure. Doctor said this could indicate a metabolic disorder and we needed further testing to sort it out. I disagreed and begged her to contact her mentor from the Charlie Foundation. Begged her to call the neurologist who was on vacation. It was getting late. I felt desperate. OFF again.

I called my husband as soon as I hung up the phone. We prayed. He reminded me that since we changed our sons diet, he had slept through the night for the first time in years….years! That has to be a great indicator for this diet to be pursued. We continued to pray. And quickly texted and emailed many others to stand with us in prayer to get his hospital stay reinstated. The neurologist emailed me. I emailed back and said this diet must be initiated for the sake of our son. He blamed the dietitian for canceling. I stood strong and firm and kept giving both the neurologist and the dietitian the same information. I felt prompted to send the dietitian pictures of our son. He was a real boy. His life drastically effected by epilepsy. And now his development suffered from the unnecessary use of medications that did not work. He was not just a name on a page. Not simply a referral on a piece of paper. He was not someone who should wait. He should be given the opportunity to heal. I screamed to myself, “C’mon – we gotta do this!!!!” She heard my cry and the Lord was on the move responding to our prayers I started emailing the doctor, he emailed me back…and suddenly we were back on! Whew!!! After a couple hours flew by…adrenaline filled hours of advocating and making phone calls…a lot was prayed over and contemplated. The dietitian called me, elated…the neurologist said we were ON AGAIN! I finally cried.


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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