Keto Resources:
Yahoo "ketogenic" group (http://health.groups.yahoo.com/group/ketogenic/).
The Charlie Foundation (www.charliefoundation.org): Includes a forum where you can post questions that will be answered by Beth Zupec-Kania, one of the most experienced keto dietitians in the world.
Eric Kossoff (ekossoff@jhmi.edu): World-class Johns Hopkins pediatric epileptologist and patron saint of the ketogenic diet, he knows everything about the diet and responds to parent emails within hours (obviously don't abuse this; only use it if you can't get answers any other way!). He was also the one who suggested the Cleveland Clinic for John's surgery, a one-sentence email that changed our lives.
ketokid.blogspot.com: A blog by my friend Cathy, whose son Noah became seizure free on the diet.
Vanessa Aldaz (valdaz@rchsd.org): A dietitian at Rady Children's Hospital in San Diego who specializes in the MCT oil diet and other variations of the ketogenic diet for children with allergies or other dietary constraints.
Choosing Keto
After almost 5 months and 6 medications, the seizures continued. The latest MRI showed no brain abnormalities, so the doctors recommended we try the ketogenic diet rather than doing a surgical evaluation. Waiting between the time we decided to do the diet until the time John started (about three weeks) was torture.
A few weeks before starting, we met with the ketogenic diet administrator at the hospital. We left feeling excited and good about the decision, and also relieved that the diet was not as harsh on babies as we had thought, as babies did not have to fast to begin the diet and they did not have calorie or fluid limitations. We were told that we would arrive at the hospital, check in, and start living as normal except that little John would drink KetoCal, a special ketogenic formula, and we'd have to monitor his urine and blood. He wouldn't even have to have an IV if everything went well. They would begin reducing his seizure medications right away; the diet acts like a seizure medication and they didn't want to overload his system.
We asked what the chances were that it would work. The diet "works" when it completely or almost completely controls seizures; anything less than that is not worth staying on the diet given that it is basically very unhealthy. The nurse practitioner said that she would say there is at least a 50% chance of it working. Although I knew this wasn't overwhelming odds, it felt great to think that he could be as close as a coin toss to the end of his seizures.
We asked what the chances were that it would work. The diet "works" when it completely or almost completely controls seizures; anything less than that is not worth staying on the diet given that it is basically very unhealthy. The nurse practitioner said that she would say there is at least a 50% chance of it working. Although I knew this wasn't overwhelming odds, it felt great to think that he could be as close as a coin toss to the end of his seizures.
The Friday before John was scheduled to start the diet, the hospital called to say that the insurance had denied his inpatient stay, claiming insanely that it was not medically necessary, and that the hospital would therefore not admit us. I felt crushed into a million pieces. I sobbed over my zoned out, seizing baby who had used to be so happy and interactive. But I put those feelings to work over the weekend, beating down the door of the doctor and the hospital to let us sign a waiver and admit him anyway while we worked on the insurance business. By hard work and prayer and a miracle, it happened.
Keto Day 1 (age 5 mo.)
When we got to our hospital room, John was weighed and we met the nutritionist, who explained how the diet would begin. We would take KetoCal 4:1 powder and mix it with some Nutramigen powder to make a 3:1 powder. They do make KetoCal 3:1 but it is unflavored so not as good for oral feeding. Once we had this 3:1 powder, we would gradually introduce it into John's diet over the next three days. Today he would get 1/3 of the KetoCal mixture and 2/3 Nutramigen. Tomorrow he would get 2/3 KetoCal mixture and 1/3 Nutramigen. Wednesday he would get 100% KetoCal mixture. She said it is common for blood sugar to dip or the children to get very tired, but it doesn't always, especially when they introduce the diet slowly like they did with little John.
When we got to our hospital room, John was weighed and we met the nutritionist, who explained how the diet would begin. We would take KetoCal 4:1 powder and mix it with some Nutramigen powder to make a 3:1 powder. They do make KetoCal 3:1 but it is unflavored so not as good for oral feeding. Once we had this 3:1 powder, we would gradually introduce it into John's diet over the next three days. Today he would get 1/3 of the KetoCal mixture and 2/3 Nutramigen. Tomorrow he would get 2/3 KetoCal mixture and 1/3 Nutramigen. Wednesday he would get 100% KetoCal mixture. She said it is common for blood sugar to dip or the children to get very tired, but it doesn't always, especially when they introduce the diet slowly like they did with little John.
The nurse tested little John's blood sugar, and it was normal. She would repeat this every 4 hours for the duration of his stay. She also taught us how to test his urine. We placed cotton balls in his diaper and then squeezed them onto test strips, waited 60 seconds, then checked the readings for specific gravity (to monitor hydration), ketones (to monitor ketosis), and blood (to monitor for kidney stones).
The nurse practioner overseeing the diet examined John. She instructed us to give Phenobarbital pills instead of liquid, since the liquid has sugar and is not compatible with the diet. Giving seizure medications to a baby is quite an ordeal. They have to be crushed (or if they are capsules, opened and emptied) and then dissolved in liquid, sucked up into a syringe, and titrated into the baby's mouth. We had been doing this three times a day since John was born. While we're inpatient, the hospital pharmacy made up the medications and sent them up to us ready to give to the baby. The nurse brought John's Topamax and Zonegran ready-mixed in a syringe. I started to give it, then thought I should check the label just in case. Sure enough, they had measured out twice as much Topamax as he was supposed to have.
By the afternoon, my adrenaline wore off and the old fatigue and fear set in again.
In the afternoon, the epileptologist stopped by. I asked him if it was necessary to buy keto-friendly baby wipes and other baby products, as some keto centers insist. He said no, he thought that was ridiculous, but I could do it if I wanted to. This was one of the first "red flags" to me that our team was out of touch with the ketogenic diet mainstream.
Our wonderful nurse, Maureen Collins, talked to me for about 45 minutes about her own experience as the mother of two kids who were special needs kids but turned out just fine. She talked to me about the need to stay positive and if anyone says anything negative just to brush them off and say, "I'm not listening to that." This was a message we have clung to in the years since, and it has served us well.
By the end of the day, John wasn't making ketones yet, but he was tolerating the food well.
Here is the very condensed version of the weeks following our induction.
Age 5-7 months
We soon discovered that our keto team was incompetent. They were unable to get my son into large ketosis and unwilling to deal with his allergies to milk and soy that soon became apparent. Meanwhile, his seizures were worse than ever, which we later learned was because his phenobarbital level had plummeted when he switched to pills instead of liquid. The last straw for me was when the nurse practitioner who ran the diet told me, "I just don't understand your sense of urgency. His seizures are a problem that you are going to have to deal with for years, and maybe even his whole life." (In other words, "Settle down and get used to it.") I told her that I recognized that possibility but I did not think that was an acceptable approach to treatment and that I was not returning to their clinic.
With the gracious help of Beth Zupec-Kania, we put John on a transitional diet based on Neocate and MCT Oil. Dr. Kossoff told us about a dietitian in San Diego named Vanessa Aldaz who specialized in alternative keto diets for kids with special dietary needs. By the beginning of April, we finally had a recipe for a hypoallergenic keto formula. It consisted of small amounts of Neocate supplemented with NanoVM, Concentrace Mineral Drops, Complete Amino Acid Mix, Poly-Vi-Sol with Iron, and huge doses of MCT oil and olive oil. The oil did not mix with the Neocate, so we had to syringe it into his mouth after each bottle. Yummy... but it worked.
Age 7 months
I can pinpoint the very hour in which John went into large ketosis. I was on a plane with him and I noticed that he was moving more like a normal child. He was making good eye contact with me, smiling and laughing, and reaching out to hold my hand. The next morning, he was sitting up and playing with a toy for the first time in his life. Sure enough, within 48 hours the ketostix were showing large ketones. When his Early Intervention teacher came to our house that week, I said, "Come on in, there's someone I want you to meet." The change in John was remarkable--I finally had my happy, giggling baby back. All signs of cortical visual impairment were gone--he was making eye contact and focusing very well.
Age 8-14 months
We love the ketogenic diet for bringing our baby back to us. It brought the light back into his eyes and the strength back into his body. However, it did not stop his seizures. Also, because of the disgusting MCT oil he was forced to drink due to his allergies that prevented him from drinking cream, it had the profound side effect of giving my son strong oral aversion. He eventually stopped eating altogether and had to have an NG-tube, and then a g-tube. As a result, his early childhood has been marked by feeding issues on top of all of his other issues. But it was absolutely worth it for those months of having a bright, happy, developing baby.
Here is the very condensed version of the weeks following our induction.
Age 5-7 months
We soon discovered that our keto team was incompetent. They were unable to get my son into large ketosis and unwilling to deal with his allergies to milk and soy that soon became apparent. Meanwhile, his seizures were worse than ever, which we later learned was because his phenobarbital level had plummeted when he switched to pills instead of liquid. The last straw for me was when the nurse practitioner who ran the diet told me, "I just don't understand your sense of urgency. His seizures are a problem that you are going to have to deal with for years, and maybe even his whole life." (In other words, "Settle down and get used to it.") I told her that I recognized that possibility but I did not think that was an acceptable approach to treatment and that I was not returning to their clinic.
With the gracious help of Beth Zupec-Kania, we put John on a transitional diet based on Neocate and MCT Oil. Dr. Kossoff told us about a dietitian in San Diego named Vanessa Aldaz who specialized in alternative keto diets for kids with special dietary needs. By the beginning of April, we finally had a recipe for a hypoallergenic keto formula. It consisted of small amounts of Neocate supplemented with NanoVM, Concentrace Mineral Drops, Complete Amino Acid Mix, Poly-Vi-Sol with Iron, and huge doses of MCT oil and olive oil. The oil did not mix with the Neocate, so we had to syringe it into his mouth after each bottle. Yummy... but it worked.
Age 7 months
I can pinpoint the very hour in which John went into large ketosis. I was on a plane with him and I noticed that he was moving more like a normal child. He was making good eye contact with me, smiling and laughing, and reaching out to hold my hand. The next morning, he was sitting up and playing with a toy for the first time in his life. Sure enough, within 48 hours the ketostix were showing large ketones. When his Early Intervention teacher came to our house that week, I said, "Come on in, there's someone I want you to meet." The change in John was remarkable--I finally had my happy, giggling baby back. All signs of cortical visual impairment were gone--he was making eye contact and focusing very well.
Age 8-14 months
We love the ketogenic diet for bringing our baby back to us. It brought the light back into his eyes and the strength back into his body. However, it did not stop his seizures. Also, because of the disgusting MCT oil he was forced to drink due to his allergies that prevented him from drinking cream, it had the profound side effect of giving my son strong oral aversion. He eventually stopped eating altogether and had to have an NG-tube, and then a g-tube. As a result, his early childhood has been marked by feeding issues on top of all of his other issues. But it was absolutely worth it for those months of having a bright, happy, developing baby.
