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!
I’ve been researching KD for a while. As mentioned in the text, this story is not unique. In epilepsy, KD is almost a standard therapy for children now. Then there is the book by Mary T. Newport and the story of her husband partially reversing Alzheimer, again there are more similar stories out there. And finally, we all know about the effect of KD on fat loss. Could we then conclude that KD is generally the right way for all of us to go?
Martin-
An across the board recommendation of ketosis for ALL!…perhaps not but it IS interesting how many conditions benefit from ketosis. I think it’s safe to say most would benefit from at least occasionally dipping their toes into the ketogenic pool.
to ekon’s point below if KD actually repairs metabolism, vice just circumventing mitochondrial dysfunction, you would really have to consider it if nothing else as a therapy to cure the condition. If KD doesn’t actually repair the problem, then it becomes the crutch that helps the lame walk and that is good too. So does it repair, or just work around?
Rob: My (humble) take on keto: Since so many conditions seem to be related to an inability to utilize glucose properly (probably at a mitochondrial level), it is perhaps not surprising that keto is helpful for a wide range of problems.
Mitochondrial dysfunction is probably a large chunk of the condition usually referred to as a “broken metabolism” in low-carb circles, for instance. The availability of ketones allows the body to route around the glucose problem, with sometimes startling results.
Still, that also means that benefits will be somewhat limited for those who do have good glucose utilization.
I myself seem to have so-so glucose metabolism (I.e. a tendency to fatten and get cravings for sweets, etc. when I run on glucose), so I try to stay ketogenic most of the time. Has worked very well for achieving weight loss and subsequently attaining weight stability for the last four years…
Wow, what an incredible story! This brought tears to my eyes. I used to work at the Los Angeles Children’s Hospital, and I saw so many families in similarly devastating situations. I know now that the changes you made would have really helped many of them, and seriously altered the course of their lives. I am so glad that you worked so hard to find solutions, rather than just trusting the medical community to tell you what to do (or what could not be done.) Thank you so much for sharing your story, and a heartfelt congratulations on the changes in each of the members of your family.
Wow, what a story. Kudos to you for following through on your instincts and standing against the medical community. BLessings to you and your family.
How many more stories like this do doctors and other healthcare practitioners need to see before they address diet? Another amazing story that improves the lives of a whole family, awesome stuff and keep it up!!!!
I agree! Most docs just want to pump us full of drugs. Too bad they can’t see that diet is medicine. Prescribe a pill is their answer to everything.Sad.
Wow great story!! I have been following Paleo (mostly) since early January, I have been patiently hoping my husband will change his mind and join me. He has had some recurring pain in his heel, and he showed me an article he read that Statins can contribute to ligament and tendon issues. I told him these were addressed in The Primal Blueprint and he has actually picked it up to read…there is hope.
Thanks for posting!
Awesome! That is a great story, thank you for sharing it with us. I have a friend who has a son with a rare genetic anomaly which also causes seizures (and is tube-fed), and I often wonder if he could go off or at least reduce all his panoply of meds if she were to feed him a ketogenic diet…
Congrats to you and your family. My toddler also has seizures and I think a near paleo diet has helped keep him mostly seizure free. You should be so proud of all your hard work and how it has paid off for your family. I hope your children continue to improve and beat the odds!
This is a nice one looking at ketosis and Type 1 diabetes:
http://bit.ly/z3nhjc
wow, what a scary, scary story — I’m happy that things are looking up!
It’s great to see another success story for the Paleo Diet, and so encouraging to see that the online community working hard to fill the gaps in standard medical practice.
I do believe that the medical community will catch up eventually, once they’ve seen that this isn’t going away, which might take years, and finished their extensive studies and reformations, which will definitely take years. Unfortunately, that’s much to late for a lot of people. Fortunately, we have independent experts and ordinary people who are ready to share their experiences, develop a modern, common wisdom, and support one another through tough times.
Can you please share with foods/recipes you fed your daughter and son?
Brought me to tears. So happy that you pushed through and found Paleo for your whole family. Congratulations.
This is an amazing story. I would like to hear more. I wish this mom would start her own blog. And share the formula recipe!
Also, Atkins for seizures is very effective for epilepsy, almost as effective as keto. Sounds like what the mom switched her daughter to. Keto is maintained in many children for years, and is not dangerous under medical supervision. Perhaps in TS there would be a higher risk for kidney issues, I don’t know. Many parents of epileptics (myself included) are intimidated by doctors into trying harmful drugs first. Good to see the word being spread. My own son is on a paleo/low carb/gluten free diet and while he’s no longer having seizures, he was having learning issues, and the diet helps a lot. And my narcolepsy has also improved greatly on paleo. I’m been able to cut my own meds way back.
I am Jennifer’s mother and Grandmother to Kailey and Dylan. I remember the look in the nurse’s eyes as Kailey exibited “abnormal activity” and had to be rushed out for emergency care. I went and held my daughter’s hand because I couldn’t look in her eyes— as told her everything would be o.k. Although, I knew things would never be the same.I silently said to myself my daughter”my Jenny” would never be the same.
I was wrong! Very wrong!
Jen, has never made me more proud! She stepped up to her daughters situation with such determination and met every need possible. She researched and questioned every medical staff that came into contact with Kailey. Jen would not settle for anything but the best healthcare. She made some enemies along the way but the staff knew she wasn’t going away!
Three yrs. and another child Jen has never given up! She knows she is the only voice for those children and she will be heard! And because of her due diligence the children have developed up to this point far more than expected! Jen, I am so proud of the mother and woman you have become! I love you,Mom xo
What a touching story! So glad you have a supportive family. (What kind words from your mom)
This story gives me incredible hope and encouragement to continue taking a stand for my own daughter’s health. My four year old daughter, Shyloh, and I both suffer from Ulcerative Colitis; although my daughter is experiencing a flare that is by far worse than I’ve ever had. We are in and out of hospitals nearly weekly, and on and off medications continually (Asacol, 6mp, Remicade IV, Prednisone, Prevacid). I recently took family sick leave so that I can give my full attention to my child’s health…and ultimately mine. I’m a single mother, so this kind of commitment seems crazy to some people…until they see the pain my baby is going through. Like Kailey’s mother, I am also educating myself in anyway that I can. I am determined to gain the quality of life that God intended us to have! I have considered doing the Specific Carbohydrate Diet and The GAPS Diet, but have found the phases are difficult to do with a four year old that is an extremely picky eater. Eating Paleo modified for auto-immune disease seems to be the easiest for us. I know that I feel better after eating Paleo for four months, but the real test is to see how well my daughter does when she finally taper’s off the Prednisone (steroid). I NEED to hear stories like Jen and Kailey’s; because as anyone who frequently consults with doctors and medical dietitians may know, it can get very frustrating and discouraging hearing so many opposing view points.
Thank You!
Hi Robb,
I’ve been reading about the use of a (though they call it “the”) ketogenic diet at Johns Hopkins to treat epilepsy in children when drugs haven’t been able to manage the seizures. There are several common themes that I’ve noticed:
1. The diet is incredibly complex, restrictive and requires medical supervision and training provided to the family to ensure they know how yo weigh and measure all meals for the child. Due to the difficulties the diet is not used until pharmaceutical treatments have failed. I guess for a family used to the SAD, it would appear restrictive as does Paleo to many. I would hope that people start looking at changing diet as a first step rather than a last resort after trying numerous drugs.
As Johns Hopkins has been using this treatment for a number of years on hundreds of patients I assume that they would now have a lot of data on how a ketogenic diet affects the body in ways other than stopping seizures, have you had the chance to see any of their research? Also, is anyone doing any comparisons between their ketogenic diet and a paleo style keto diet?
2.The diet prescribed is high fat, low carb AND low protein, as well as being calorie restricted. Can you explain why it should be low protein to be effective? Surely increasing the protein would be better from a nutritional perspective, but would it be detrimental to treating the seizures and if so how? And why should it be calorie restricted?
3. The diet is deficient in nutrients so a good (carb free) multi-vitamin is required. It appears the their ketogenic diet is still based on a SAD type diet. Are you aware of anyone doing similar work bit using a paleo type ketogenic diet? One would have to assume that the results would be as good if not better if veggies played a bigger role in the diet providing more nutrients naturally than relying on supplements.
Thanks for the great blog and podcast and the huge difference you make to so many lives for little, or in many cases no financial gain.
Hey Amigo:
Read up on ketosis:https://www.google.com/search?aq=f&ix=teb&sourceid=chrome&ie=UTF-8&q=robb+wolf+ketosis
I think this whole position that ketosis is “highly complex” is just bunk. It’s not that hard to pull off, especially if we put in things like coconut products which thee MCT’s make ketosis even easier to maintain. The Stanford University ketogenic diet program has been running almost 100 years…long term health has been tracked in these people and it’s “quite good.”
You need low protein to maintain ketosis, higher protein will lead to glucose production which will pull the person out of ketosis.
The “nutrient deficiency” thing is just funny. With lower carb intake nutrient needs drop, Gary Taubes did a great job of talking about this in Good Cals Bad cals. And you are right, one may use ubiquitous nutrient dense, low carb density veggies and nip the nutrient issue in the bud that way as well.