The Ketogenic diet is high in fat with standard protein and low in carbohydrates. This combination allows the body to generate ketones which becomes the primary energy source for a body unlike glucose in an usual case.
Due to high ketone bodies in blood a body reaches a ketosis state and that leads to reduction of seizures. One of the very useful resources is the Charlie Foundation web site. I also found the Ketogenic Diet India.org site useful. This is an accurately calculated diet supervised by a team of doctors and dieticians.
In this series, I share our experience with Ketogenic diet as an anti epileptic treatment for my daughter, Peu who has a rare genetic disorder named CDKL5. Based on what I have read and heard so far, our experience seems different. In fact, after weaning Peu off the diet, we discovered causes for a few of her underlying health issues, the hard way. Several of the unexplained issues just fell in place. During this span of last 3 years, I have made several observations and discoveries about Peu’s health condition. However I am yet to nail down the core reasons for her health condition but hope will reach that milestone soon. The lesson learnt from this experience is that there is no short cut for positive results. One has to learn from experiences through trial and error.
I wish to reiterate that what I share here is specific to Peu and might not be applicable to any other child. Nonetheless your thoughts, feedback and experience are valuable to me.
We started the ketogenic diet in October 2012. Peu was two and a half years old. After trying multiple anti epileptic drugs and two courses of ACTH, which failed to stop her seizures, I was keen to start the diet. I educated myself with lot of information about the diet. There are numerous resources available on the internet. I felt we would finally attain success to control her seizures. During those days, unaware of her diagnosis, we thought once we control the seizures, all problems ( developmental delay with hypotonia and CVI) will get solved and things will bounce back. Today we realize, it was a futile attempt. Her genetic condition is the underlying reason for all the delays and not the seizures. Her body uses seizures to show in a brutal way that her brain has a serious issue. I also read somewhere that due to the short seizures, a more severe damage of the brain is avoided but am not sure of its authenticity.
Before our first visit to the neurologist who prescribed ketogenic diet, we had already started low glycemix index (LGI) diet at home. We did see a reduction of seizures both in intensity and frequency which just strengthened our hope that Ketogenic diet is THE solution for her seizures.
These days some doctors prescribe Ketogenic diet as one of the mainline treatments for refractory seizures. However we chose it as the last treatment option after having tried majority of the drugs. We realized one route was exhausted and now needed to start another route to treat her seizures.
I agree that starting and maintaining the diet is a time taking process but eventually you develop a routine around it thus making it manageable. However there are three genuine challenges for starting and maintaining the diet with your kid:
- if you have siblings of your child who are on normal diet. it leads to extra work for you.
- If your kid is cognitively aware of what he/she is not allowed to eat and she gets access to the barred stuff at home or at parties, at school etc., it might be difficult to maintain the ketone levels and might lead to other consequences.
- If you travel outside of your home along with your kid, it requires a lot of planning to ensue that you can stick to the diet round the clock. But extra planning and preparation is always needed when you travel with a special needs child with or without diet.
In my next post I will share our experience with starting and maintaining ketogenic diet for my daughter and its effect on her seizures.
Your input and feedback are welcome.