In this part, I describe our experience with doing the Ketogenic diet on Peu, who has a rare genetic disorder known as CDKL5 disorder. Our experience might be informative/beneficial to parents who are planning to start the diet for their child.
In India, a neurologist, Dr Janak Nathan, from Mumbai pioneered ketogenic diet as an alternative treatment for epilepsy in India. The best part of his treatment plan is that he does not need hospitalization to start the diet. Instead he conducts a four day out-patient consultation. He also provides a recipe book that he has himself written keeping in mind the ingredients of Indian meals. He and his dietician team provides orientation and hands on training to all parents and caregivers. After the first consultation, he performs a monthly review for three months and thereafter tri- monthly reviews. His team is always available over email or phone.
Ideally ketogenic diet treatment requires a ratio of 4:1 for fat: (carbohydrate + protein) content in a meal. Dr Nathan has modified that and he starts with 2:1 ratio and then gradually increases if there is a need based on each child’s response. Several blood tests were done to ensure she is eligible to get started with this diet. The first step is called carbohydrate washout where all trace of carbohydrate is removed from the child’s body completely.
We as parents had to get familiar with a weighing scale, measuring utensils and best practices to stick to the accurate measurements provided by the dieticians. The idea was to have a fixed calorie intake in a day based on her weight, and then divide the calorie equally between 4 meals in a day. Each recipe would have metrics like total energy in calories divided further into energy from fat and energy from carbohydrate + protein. While preparing a meal, we needed to measure each ingredient as per the recipe provided to us by the dietician. For an example, in a meal of 250 kCal, to acheive a ratio of 2.7:1, we gave 44 gms of a specific type of vegetable (carbohydrate), 24 gms of fish (protein) and 20 gms of oil (fat). We gradually developed a routine to prepare 4 meals a day based on the measurements provided in each recipe.
In our case, we started with 2:1, then went to 2.5:1, 3:1, 3.5:1 and then finally settled with 2.7:1 as anything above 3:1 was causing her to vomit incessantly. This fine tuning was done probably in a month’s time. Within a month we also discovered that Peu had egg allergy, could not tolerate cheese and considering the food ratio, we could give very minimal amount of fruits. We had also restricted intake of Gluten (wheat), Casein (milk), Soy and Corn because of their relatively high glutamate and asparatate content known to cause neuro-excitement. However this restriction was never a part of the ketogenic diet rules but we applied it based on some studies that we had read. Besides the diet, we started multivitamins, multi-minerals and calcium supplements as recommended by the neurologist.
One very important aspect of maintaining ketogenic diet was ensuring her ketone levels were high through out the day. We did this through keto-stix, which is measured from urine sample (a few drops). Our attempt was to obtain the highest level (4++) at each of the four times we measured through out the day. Now besides the seizure log, we maintained urine ketone levels log on a daily basis. After several fine tuning measures, we attained 4++ level all times a day but missed the early morning reading as there was a gap of 9 hrs between dinner and breakfast. We even tried to feed her at 2:00 AM, in order to achieve the ideal ketone levels. We tried very hard to be accurate as much as possible. As per doctor’s advice we altered the last meal ( dinner) to be at 3:1 ratio but due to her intolerance, we had to discontinue. However, in a span of a few months with observation and experience we could nearly attain 4++ all four times of a day.
All this and more had to be done on a daily basis and there were no holidays or gaps during a trip or festival. All meals had to be accurately measured and last bit had to be fed ensuring no spillage or wastage.
We put in so much effort with just one objective of getting her seizures under control. We read several stories of parents, for some seizures stopped after the second day, for some in 15 days and for some in a month. Our doctor said it might take 1-3 months for the effect to get started. We were ready to wait. The first effect we saw was increase in seizures. We self consoled, maybe since the metabolism of her body is changing from glucose as a source of energy to ketones as a source of energy, her body might be reacting with seizures. Well we were not wrong. Any small little change that occurs in her body or her environment her body reacts with seizures. This is true till date.
We waited for 6 months, following the diet diligently with precision but saw no sign of seizures stopping. Her blood work during our monthly visits to the doctor, turned out to be fine. As per the doctor, the EEG showed improvements. We remained hopeful. The effort we put in were:
- Ensure there was never a break in her measured meals.
- Ensure we prepared each meal that was palatable and tasty.
- Travel with a special needs child who is very sensitive to noise to meet the doctor on a regular basis.
- Discipline ourselves and curb our urge to feed her when we were having a dessert or any normal food.
- Create a customized recipe book.
Nevertheless we continued and decided to continue as we had run out of all options. There was no other method to try to contain her seizures. All we thought was maintain 4++ ketone levels though out and we will reach our target.
The best part of the diet was that we gradually tapered her off all the two medicines. For Valparin, we had stop it abruptly as her platelet count had dropped drastically. We also got freedom from the deadly Rivotril (Klonopin). We continued with her multivitamin and multi-mineral and calcium supplements. After stopping all medicines and with the diet on, we definitely could see some alertness and vocalization in Peu. This was enough to keep us going on with the diet.
Approximately in an year’s time, September 2013, her seizures stopped. We were overjoyed. But this period lasted for around 2 months. I had started a protocol to kill germs and worms in her body but it probably disturbed some form of balance in her body resulting in her seizures to be back in a terrible way. Another probable mistake I had done was to stop her supplements briefly, I thought her meals were good enough and the ocean water that I gave her was sufficient for supplementing her with all minerals. If I look back I realize that we learn through mistakes. This experience was needed to discover the hidden piece of her uncontrollable seizures. Her diagnosis of a genetic disorder did solve the puzzle partially but we had yet more to discover. One of the lessons learnt is never to stop her supplements. With numerous years of taking anti eplileptic drugs and high ACTH steroids for 7 months, she definitely needs the multi-mineral supplements.
In my next post, I describe how Peu’s health was impacted by this strict diet and how we finally weaned her off ketogenic diet. During this process, we discovered some vital clues to keep her seizures under control.
In three years of using ketogenic diet, I have gained knowledge about nutrition, natural food, calories, and several other aspects of healthy nutrition and food habits.
I perceived that we should consume fat as less as possible, the reality is that healthy fat is needed by your body and brain. Healthy fats are more essential than carbohydrates. Reduce carbohydrate (grains) but have adequate quantity of healthy fats. This useful information is valid for all of us.
Feedback and inputs are welcome from all.