What do you do when modern medicine has no answers?
After seeing six neurologists, two pediatricians, one allergist and a cardiologist, Dawn Willey learned that her daughter, Kennedy, has a rare form of epilepsy that is notoriously unresponsive to traditional medications.
Doctors said Kennedy would begin to regress developmentally between the ages of 2 and 6 years old. Older children with Kennedy’s diagnosis are often unable to speak and walk, even if they were able to as small children.
Today, I am thrilled that Dawn, who blogs at Home Food Heals, is joining us to share how lifestyle changes have transformed her daughter’s life. This story gives me so much hope for families facing an “impossible” diagnosis.
Thank you for joining us today, Dawn!
Mommypotamus: On December 26th, 2008, your world turned upside down. Can you describe how the events of that day unfolded?
Dawn: My husband and I are high school sweethearts. We have been together for 19 years. Christmas 2008 was the first and only time both our families stayed under the same roof with each other. It was one of the happiest Christmases ever!
Kennedy acted like a normal 9 month old on her first Christmas, but that night she had trouble sleeping. I went into her room about 3-4 times that night due to fussiness, but at 7am the next morning I awoke to something different, a noise I had never heard before. (It’s so hard to replay this back in my mind. I remember every single detail.) I ran into her room and touched her body because my eyes were adjusting so I couldn’t see very well. I tried to move her but her body was rigid and shaking.
I had only witnessed one seizure in my whole life in high school, I had no experience with them, but I knew she was seizing. I picked her little body up and ran into get my husband and then ran into the living room. Everyone there says they will never forget my screams/cries. They are came running out of their rooms to see what was wrong. My dad called 911. I kept begging for someone to tell me what to do and my dad was trying to get help from 911, but they said they couldn’t do anything over the phone due to liability reasons. My dad was telling them that we needed a helicopter not an ambulance because we were over an hour from the closest major hospital. They said only emergency personnel on site could determine that.
We lived in a gated community so everyone thought it would be best if we drove to the gate to meet the emergency responders. By the time we got to the gate, her right side of her body was completely paralyzed. One side was seizing and the other was limp. It was a mother’s worst nightmare. It was the most horrible day of my life and since then we have had many more horrible days, but that takes the cake, because I had no idea what I was dealing with.
The fire chief showed up first after about 15-20 minutes and immediately called for a helicopter. The helicopter showed up about 35-40 minutes after the seizing started. She was still seizing when it arrived. I was sobbing, dazed, lost, still in my pajamas when my husband told me to get in the helicopter. They could only take one parent. The pilot looked me in the eyes and told me I had to get a hold of myself if I wanted to go with Kennedy. I couldn’t even comprehend what that meant, I just shook my head and got in the helicopter.
They gave me head phones so I could hear everything happening to her. All I heard was “she is still seizing, can’t find a vein, need to get an IV.” However, once we landed, she stopped seizing and came to. In fact, after a short nap she was a happy baby for about 5 minutes. While she was in and out of sleep I contemplated everything that had happened in the last week that could have caused this. But I knew in my heart exactly what it was. Eight days earlier, I had walked into our pediatrician’s office and the doctor had told me it was going to be an easy day, only 1 shot. It was the only time in my life, I remember clearly hearing the word “flee” as the hair on the back of my neck stood up. It was her third installment of the DTaP vaccine. I started questioning the nurses and doctors, but they treated me as if that was just crazy talk. “Vaccines couldn’t have done this.” It was the first step on a lonely road, my first time going against conventional wisdom, but I knew and from that instant I have never waivered, even going against my own family at times (only at the beginning, they all see it now).
The hospital wanted to release her within a couple hours determining it was just a “febrile” seizure. After you have just witnessed your child seizing for over 40 minutes, no one gets to tell you, “it’s normal and JUST a febrile seizure.” I demanded that we stay at least over night for observation. They said it wasn’t necessary. I called my pediatrician to get some help from her. She said she would call the hospital. It didn’t matter. I was holding Kennedy while she was sleeping. She opened her eyes, looked straight through me and went back to sleep. I said it’s going to happen again. The nurse told me I was paranoid. Within 5 minutes she was seizing again. They took her out of my arms and about 5-6 nurses and doctors and descended upon her. I stood outside the room watching helplessly, praying.
After that they ran every test they could possibly run, an EEG, spinal tap, MRI….they administered meds to calm her and to stop the seizures. They couldn’t find one reason as to why she had seized. It was after 5 o’clock and we were being transferred upstairs to a room. About 8 o’clock that night a nurse practitioner came and checked Kennedy and made us repeat the scenario for about the 100th time that day. At this point, I had not eaten, I was still in my pajamas and was barely functioning. She looked in Kennedy’s ears and said that she had an ear infection, therefore that is what caused the seizures. Okay, sure lady. At least 5 other doctors had seen her that day and now the worst day of my life was caused by an ear infection? I wasn’t buying it.
Mommypotamus: Oh my goodness, halfway through the fourth paragraph I had to get up and go squeeze my babies. What was life like after you left the hospital?
Dawn: My life will be forever divided by that day. Everything has changed. Everything I do, every action I take throughout my day, begs the question “how will this affect Kennedy?” Washing the dishes, doing laundry, cleaning the house, making our food, going outside, literally every single thing I do. Will she be sensitive to the dish soap (even though I do everything organic and as pure as possible), did someone (a neighbor or family member if we go to their house) spray pesticides, use toxic cleaning solutions, etc? Is it too hot or too cold outside? Is that person sick? Every place I go with her, I have to map out an emergency plan in case something happens. I always have to have a plan b. A lot of worry and stress…..
Obviously, it wasn’t this severe when we left the hospital, but then it was probably just as bad, just in a different way because there was no diagnosis.
Mommypotamus: How long did it take to get a diagnosis?
Dawn: We got a diagnosis 17 months later, more than 20 something seizures after seeing 6 neurologists, 2 pediatricians, 1 allergist and 1 cardiologist. The diagnosis, Dravet Syndrome, diagnosed only through genetic testing is defined as a rare, severe form of epilepsy that results in frequent, often prolongued seizures, speech impairment, developmental delay, ataxia, and orthopedic problems.
It is thought to be caused by a mutation in the gene that codes for the sodium ion channels in our nerve cells. Dravet Syndrome affects roughly 1 in 20,000 to 40,000 children, though there are likely many more undiagnosed cases. Children usually have their first seizure (a generalized tonic clonic or “gran mal”) in the first year of life, and it is often an episode of status epilepticus (lasting more than 30 minutes).
After a seizure, a few days or weeks pass by before another attack. The seizures may be spaced by one to several months, but gradually become more frequent as time progresses. The seizures are extremely refractory [resistant] to traditional anti-epileptic medications, and often require medical intervention to stop them. The second year of life often shows a lack of language development, more frequent seizures, and varying types of seizures.
Most children show some developmental delay in addition to speech between the ages of 2 and 3. The seizures morph in length, type, complexity, and keep the parents questioning what to medicate and what to “let go.” Gait issues such as ankle pronation and foot turning can appear, and children become extremely sensitive to heat, excitement, movement, and occassionally light, all of which can be seizure triggers. Medications that exacerbate seizures include Lamictal (Lamotrigine), Dilantin (Phenytoin), and Tegretol.
The prognosis for children diagnosed with Dravet Syndrome is unknown. They will always battle seizures, and all known affected teenagers and adults are dependent on caregivers. The mortality rate is 15-20%, most deaths ocurring during sleep due to EP (Sudden Unexplained Death in Epilepsy).
Mommypotamus: What are the treatment options for children with Dravet’s? Did you try any of them?
Dawn: After Kennedy was diagnosed we immediately made an appt with a neurologist considered to be on the forefront of knowledge for Dravet syndrome. It was July 6, 2010. I still have the notes I took from our appt. with our “solutions.” Would you like to see them? It was a very hope crushing appt. Dr. Laux was nice and spent over 2 hours with us, but there is nothing hopeful about Dravet. Our options were: 1. Meds 2. Vagus Nerve Simulator 3. Keto Diet.
Mommypotamus: I’ll bet you didn’t love some of those options. What did you decide?
Dawn: We didn’t love any of those options and none of them were guaranteed to help anything. I researched blog after blog of heart wrenching stories with Dravet children and saw no improvement with any medicines. We didn’t decide anything right away. We didn’t know what to do. Her seizure activity was increasing. We had the prescription for the meds the neurologist recommended.
Things were coming to a head…..I kept asking God, but heard nothing. I decided that story after story in the Bible, whenever a person didn’t know what to do, they fasted. So, I was going to fast. I didn’t really know what that meant or how to do it. I also didn’t think my husband would want to be a part of it, but when I told him I was going to do it, he said I will to. So, the next Monday, we didn’t eat any food. By the time, evening arrived we were both dying (not literally) so we ate food and thought “there has to be a better way.” I called our old church and asked for help. They told us about the Daniel Fast which is where you only eat food of the ground, ironically very close to how we eat now. We did that for three weeks.
It was one of the most amazing experiences of my life. We felt completely led away from meds and back to our chiropractor who had helped us the previous year. I really can’t explain the hows or the whys, just that we both got confirmation this is where we were supposed to be and we never have questioned meds again since that fast.
We had not spoken to the chiropractor since the day Kennedy had had five seizures in one day almost six months earlier. We had felt let down by him also. He had felt just as sad about Kennedy and jumped at the chance to treat her again. He was a DAN doctor and he had been treating her as an autistic case even though she had no autistic tendencies.
The second time around I collaborated much more with my knowledge and he listened, it was much more of a team effort. He was a HUGE piece of Kennedy’s puzzle for us. He would come to our house when Kennedy was too sick to travel. He adjusted her during a seizure that she had while at his office. He worked with a local Osteopath to get more answers. He was relentless in his pursuit to help Kennedy. It was six months later that he convinced us to try the SCD diet. Kennedy was on so many supplements. She could take pills by the age of 2, but he realized that none of them were helping so he was convinced that her gut was broken and that had to be healed before we could fix her seizures.
Mommypotamus: When you decided to forego medication and work on dietary changes, did you encounter push back from your parents, in-laws, or siblings? If so, what was it like to pursue something your loved ones doubted or disagreed with?
Dawn: There was no push back on the medication issue as everyone had seen what the meds did to her and what she looked like off of them so everyone was pretty supportive, however the food issue was a different story. My in-laws were the only people who encouraged us at first, but after one month of no seizure where as we had been having them weekly up until the food changes, my family became pretty supportive as well.
In fact, we started that in March 2011 and in May, my husband’s grandma became very ill and the hospital sent her home to die. She couldn’t even lift her head off the pillow. Her esophagus was bleeding out and she had pneumonia. I encouraged them to start the GAPS diet as soon as possible. 3 years later, she is doing amazing! At 84 years old she is living on her own again, has the ability to drive again, is off all heart meds….so, I like to say that Kennedy has saved all of us. Both sides of our family have dramatically changed their eating habits amongst other things.
Mommypotamus: So you transitioned from the SCD diet to the GAPS diet? Can you describe how this was different from the days before her first seizure? What did she eat before vs after?
Dawn: I am embarrassed now to admit how we ate when she was a baby, but honestly I didn’t know any better. She was still on formula and eating baby food out of jars or plastic trays heated up in the microwave. I grew up with both parents working so the only food I knew was out of a box or from a restaurant. I didn’t eat fruits or vegetables. Macaroni and cheese was my food of choice since I was 1.
Now, we don’t even own a microwave. We don’t have any cans of food in the pantry. Everything is from scratch every morning, afternoon and night. I juice beets, carrots, kale and apples or something of the sort every morning for all of us. Sugar used to be in everything we ate, now it’s not in anything. We use honey as our sweetener. Kennedy has not had any processed sugar, grains, processed food, gluten, etc. in over 3 years.
Mommypotamus: Did you see any improvement after changing her diet?
Dawn: Everything changed. Her attitude was much better, she slept better, she doesn’t get sick nearly as much (I would say her sickness has reduced by as much as 98%) and most of all her seizures went from weekly to every 8-12 weeks. Her ability to deal with heat sensitivity has increased. Her seizures used to happen any time of day, now they typically only happen while she is sleeping (which is a much safer place for her to have them). They would last anywhere from 2-4 minutes and now they are less than a minute sometimes lasting only seconds. It’s hard to believe that food has such an impact on a person’s body, but once you see it, your life is changed forever.
Mommypotamus: Wow, that’s amazing. So normally Dravet’s gets more severe over time, but she’s actually seen an overall reduction in symptoms?
Dawn: Yes! We were told that she would regress between the ages of 2 – 6 years old, more seizure types would appear and her overall quality of life would digress. She finishes Kindergarten tomorrow, she took surfing lessons in Costa Rica last year, she plays tennis, plays the piano, loves to swim and loves to ride her bike and catch lizards! She lives life to the fullest!
Mommypotamus: Dietary changes have been linked to improvement for a wide variety of disorders: ADD, autism, epilepsy, eczema, depression, and more. What would you say to a parent who is thinking about starting this journey?
Dawn: Why not start it? Real food is not going to harm anyone. There are no side effects of eating a clean diet. Medications and surgeries all have side effects. I am not anti-medicine, but I know it is overused. And coming from experience, if we would have used medications to treat Kennedy, she would not be where she is today.
My Chiropractor begged me to start SCD and I was completely against it thinking that there was no way food was going to help seizures. It took over a month and a seizure a week to convince me to try. He told me “Dawn, just try it for 30 days, if nothing changes, then stop.” What could I say to that? Sure, I can try anything for 30 days.
I beg you to try this option before opting for meds. The meds will always be there to try. So will food, but food doesn’t have the side effects. I understand it’s easier to pop a pill, but consider the long term effects for your child. Research, research, research. Since starting this I have learned of so many ways to heal your body.
Mommypotamus: Thank you, Dawn, for sharing Kennedy’s story with us. Your determination is an inspiration, and I’m so happy that she is doing well.
Now, mamas, I have a special surprise for you. To follow up my interview with Dawn, Katie is interviewing Kennedy! This is an amazing video to watch when you remember that experts predicted Kennedy would severely regress by the age of six. Instead, she’s playing the piano, lobbing tennis balls, and generally doing normal six year-old stuff.