Ketogenic diet

[Ems1973]

Hi there, does anyone have any experience of the ketogenic diet with kids? Good, bad, indifferent. How was the process, what did neuro/dietician say.... outcome? Thanks

[EpilepsyMum]

Hi, my 14 year old daughter has been on and off the ketogenic diet for over 5 years. She has drug resistant epilepsy and has been on the MCT, classical and currently the Modified Keto Diet (MKD). The diet has helped (she no longer experiences atonic szs) and has made her more lucid. She used to have very long periods of stability (sometimes no szs for a few months) but she has szs most days now (but all manageable). I don't know what hospital you're under or what you've been advised but we are under Addenbrooke's and cannot fault the care my daughter receives. The diet seems daunting at first but you soon get used to it. My daughter feels better on the diet than off it and her szs definitely worsened again when she stopped the diet. The neorologist should outline what objectives they hope to achieve by introducing the diet. For us, it was the decrease in drop attacks and, as it happened, these stopped completely; and a 50% reduction in other szs. Most of the time we achieved this so the diet was deemed a success. However, she is still on 3 AEDs. We have tried to withdraw some of the meds but without success. This year, as she has been on the diet for so long, we will begin to introduce a few more carbs to see if she can maintain ketosis and retain some sz stability. It's an unpredictable journey but we reached a stage of ever-decreasing options. I hope this has helped. Good luck.

[Ems31 in reply to EpilepsyMum]

Hi thanks for replying to me. I am glad to know the diet has helped! It does seem very full on/complicated. I know it's recommended by NICE for complex epilepsy but have also read that only 3% of children are managed with it. Seems so very low... was wondering why... particularly if/when there are good results?!

I don't think all neuro's are in to it/recommend it (so says my friend, am messaging on her behalf). Not sure why. How can awareness be raised among parents/families I wonder?? She found out about it herself... Anyway, thanks you have helped