January 23, 2009, after a perfectly normal pregnancy, my daughter was born and immediately displayed seizure symptoms. I was not even able to hold her before she was swept off to the NICU, and we were informed she would be transferred directly to Children’s Hospital of Philadelphia – and there we stayed for 6 weeks trying to put the pieces together. She was diagnosed with Tuberous Sclerosis Complex nearly a week into our stay & we found out the intractable epilepsy she suffered from was due to tubers throughout her brain and complicated by hemimegencephaly on the left side. It seemed like we tried and failed every antiepileptic drug they had in stock, and her seizures raged on. The 2nd week in, NICU’s neuro team settled on a heavily dosed cocktail of Phenobarbital, Keppra, Topamax & Sabril (which was not even FDA tested or approved at the time, so we had to order it from Canada). There were so many different types of seizures, and nothing seemed to even slow the activity; the doctors didn’t seem to know where to start. Since she was seizing so frequently she was physically unable to eat, so I would pump throughout the day and the breast milk produced would be fed to her through an NG tube on gravity feeds. Two days into this process they included a dose of dilantin with her feed, and she immediately developed medical NEC, nearly requiring emergency surgery. They were unsure if it was due to her system being overworked from all the tried and failed drugs, or if it was due to an underlying food allergy, so the doctors then told me she would have to go on formula to test her for allergies.
Week 3 they gave her a milk based formula and then a soy based formula, all with the same result: bloody stools and a bloated stomach. Finally our pediatric neurologist, Dr. Brenda Porter, suggested we meet with the Ketogenic Diet Team at the hospital. They had a whole clinic that we could sign up for and eventually learn how to measure out a hypoallergenic formula mixed with mostly lipids and water to create a state of ketosis, which has proven successful for many of their most desperate cases. We signed up that afternoon and never looked back. We were so skeptical that these kids eating mayo with a side of heavy cream were in good health until we watched the transformation before our eyes. The day she became ketotic her tonic-clonic and gran mal seizures completely stopped. We spent weeks 4 and 5 watching her grow, learning how to check her blood sugar, ketones in her urine and taking notice to slight seizure activity that would indicate we need to increase her ratio on the keto diet, increasing her fat intake and again ending the clinical seizure activity. Once she started the diet she began to thrive and grow so quickly, regaining the weight she had lost during the medical NEC incident and then some, that we had to up her ratio every couple of days. Week 6 she was stable, she was able to focus her eyes, and while the subclinical seizures continued, they were now isolated to focal points on the left side of her brain, leaving us hopeful candidates for a hemispherectomy down the road. She stayed on the keto diet until she underwent surgery 9 months later, altering very little except to include meats with added oil at meals. After the surgery, the diet was the first thing they wanted to wean her from, saying it would not be good for her bone density and she wasn’t getting enough nutritients- she needed fruits, vegetable and whole grains. I was having panic attacks thinking our rescue rope was being taken away but trusted our doctors fairly blindly.
Kailey did not have any clinical seizures once being weaned off, but she also didn’t seem to be as alert. The antiepileptics made her very tired, and it was a long process to wean her off of those. I was increasingly concerned about the other aspects of her health (TSC also gifted her with heart tumors and Polycystic Kidney Disease),and my own as I ballooned to over 230 lbs at only 5’3″ and 6 1/2 months pregnant with our 2nd child. I often asked my OB/GYN for help in controlling my weight and how to change my diet without hurting the baby, but she told me I wasn’t pre-diabetic so I was fine (I promise, I was not fine!).
My son was born prematurely just 6 weeks after Kailey came out of her brain surgery, and we learned after 3 weeks in the NICU with him that he had a completely different genetic anomaly, mostly affecting GI. Unable to take him home, frustrated with all that was happening and looking for a life change – I found I slowly developed a mistrust for the medical community that continuously strung us along, blew us off & didn’t seem to have any reasoning I could relate to behind their approaches to treatment. I began researching homeopathic solutions and “ketogenic diet modified”…And that is when I came upon Paleo diet links. I read everything I could, and hounded an old high school friend who had become a crossfit gym owner and Paleo enthusiast shortly before Kailey’s surgery. Everything I learned made so much sense – common sense – the kind of thing where you just sit back like WHY would I have ever done anything else?! I then educated myself to the medical community as an industry, pharmaceutical companies, and the state of our nation’s food industry. Then I emptied out our pantries. We were flat broke, and my husband nearly came to tears as I threw out unopened bags of chips, jars of peanut butter and loaves of bread – but essentially we were in agreement, what we could not afford was to eat that crap anymore. My husband and I first made changes of our own, and then we settled Kailey in on it about 3 weeks later after perfecting some recipes, getting the hang of doing things right – we were still afraid to somehow upset her body in a way that may lower her seizure threshold.
Within a week’s time we noticed a huge improvement in Kailey, ranging from motor skills to speech. She said “mama” for the first time at 2 1/2 years old, and there has never been a more rewarding moment in my life. Now I am working on her little brother, who is still tube fed. Nothing pains me so much as hooking him up to infant formula after seeing how my daughter thrived without it. As soon as it was determined he was able to safely tolerate oral feeds, I started making paleo meals in textures he could tolerate, and now the kid eats over 1000 calories a day. We are in the process of weaning him off the tube, and he is thriving beyond expectations. He may need to continue to get strictly water through the tube due to aspiration on thin liquids, but I refuse to rush him, or set him back, by using a chemical thickener to give him fluids by mouth.
My kids are both making huge strides and I attribute just about all of them to diet changes. I was told by some of our region’s greatest pediatric specialists my daughter would never talk, never become independently mobile or be able to use her right hand – she sings me songs, scoots faster than I can walk, and independently uses her right hand to communicate by sign language. She has had only 1 clinical seizure since October 2009, and it was attributed to an ear infection which spiked a high fever. Kailey’s last MRI in December showed that the 2 largest cysts have decreased in size, and the area of her brain that was operated on is no longer at risk for needing a shunt. HUGE. 🙂 She started school last month and is now using a gait trainer in attempts to walk.
Kailey isn’t the only one that has benefited from this lifestyle change. I was told that my son may never be able to take any solids by mouth because he couldn’t keep down an ounce of soy formula mixed with rice cereal, now he eats a wider variety than most adults of poultry, fish, beef, vegetables and fruit. Personally, I am working on more than 50 lbs lost, off antidepressants and no longer at borderline high cholesterol levels. My husband is down just over 30 lbs that he has maintained for about 6 months now, and is relieved he won’t have to frantically do cardio mixed with juice cleanses to “make weight” for the Coast Guard’s check ups.
This way of life has helped us so much! Thank you for helping spread the message!