By Karen Johnsonn MS,RD,LD and MOM
Lucy with her parents Ben and Karen at the Epilepsy Association’s Purple Day Party
I am a Registered Dietitian with a master’s degree in maternal child nutrition and a culinary school diploma. Currently I am self-employed as a personal chef who caters to clients with special dietary needs or who prefer to follow a low-fat healthy diet. I have three children and I take much pride in providing them a healthy, fresh, appealing diet. Never did I imagine I would be using my training and expertise to manage my daughter’s epilepsy. Never could I have guessed that my normally developing two-year-old daughter, Lucy, would begin seizing uncontrollably and that I would be uniquely qualified to save her. Here is Lucy’s story…
In the Fall of 2006, Lucy had her first seizure. A situation that began with one grand mal seizure progressively worsened until finally culminating with the administration of the Ketogenic Diet. Before the Diet saved Lucy’s health and development there were numerous ambulance rides, doctor’s appointments, medication changes, and many, many seizures. Lucy was eventually diagnosed with a severe form of epilepsy and was experiencing a maximum of 70 myoclonic and atonic seizures daily. Lucy was no longer a normally developing child. After almost two years of seizing Lucy could no longer play, feed herself, or dress herself. The seizures were so frequent they were beginning to affect the development of her gross motor skills, fine motor skills, and memory. She could not be left unattended because she would fall with every seizure. She began wearing a helmet to protect against head injury from the falls. After numerous medication trials of various combinations of Adivan, Clobozam, Depakote, Dilantin, Klonopin, Lamictal, Trileptal, and Topomax the Ketogenic Diet was determined by me, my husband, and Lucy’s neurologist to be her final hope.
Lucy entered the hospital on May 26, 2008, at 3-years-8-months-old to begin the Ketogenic Diet. The initial hospitalization is necessary to monitor that the child safely enters Ketosis, an elevated level of ketone bodies in the blood, a state caused when the body is forced to burn fat instead of carbohydrate. Lucy did not tolerate ketosis well initially. When her body entered ketosis, after two days of starvation, she presented with diarrhea and vomiting. After three days her body adjusted and she was sent home on the very rigid Ketogenic Diet. Lucy was still seizing. The Ketogenic Diet is in no way a definite cure for epilepsy. Many children do not tolerate the diet long-term. These children fail to thrive and therefore cannot remain on the Diet. The children who do respond to the diet are still at risk because many families find the Diet too difficult to tolerated and do not remain vigilant enough, long enough for the diet to stop the seizures and allow the child’s brain time to “rewire”.
No neurological professionals can explain for certain why the Diet is effective at stopping seizures. They only know it works by keeping the child in Ketosis. Therefore, the Diet is based on a very strict ratio by weight of fat to combined carbohydrate and protein that must be adhered to by measuring all foods to the nearest tenth of a gram.
After about a month on the Diet all of Lucy’s seizures stopped. For the next four-and-a-half years every meal and snack Lucy ate would be a challenge for her and me: getting Lucy to finish every meal; distracting Lucy when she did finish and wanted more (which was more often the case as time wore on); creating new and interesting meal options; and finding ways to make the heavy whipping cream (that was unavoidable to maintain the ratio) palatable without using sugar. With the help of the Ketocalculator, a website designed to calculate fat to combined carbohydrate and protein ratios and calories for individual Ketogenic meals, I was able to create 152 different meal options for Lucy to enjoy.
Meal preparation for the Ketogenic Diet is very time consuming, even more so if you are also preparing meals for family members not following the Diet. Because all meal ingredients are measured to the nearest tenth of a gram, all food for the child following the Diet must be prepared separately from the meals of those not following the Diet.
Through hard work, perseverance, and determination the Ketogenic Diet gave Lucy her life back. She began to learn how to read, write, add, subtract, run, and even swim. I became a dietitian because I have always been a firm believer in the power of “diet”. Lucy’s story reaffirmed my belief and converted many people who witnessed her miraculous recovery. The Ketogenic Diet achieved what no pharmaceutical could: it stopped the seizures which allowed Lucy to develop as a normal child again.
PS: Purple Day is the International Epilepsy Awareness Day. Click here for more information