Back in February, Miss Z started on the ketogenic diet. For those of you who have forgotten, the keto diet is a special high fat, no carb diet that can help to control seizures. It works for approximately 50% of people – 25% see seizures stop completely whilst the other 25% have fewer and less intense seizures. There is no way to tell if the diet will work for someone without trying it.
Miss Z is part of the other 50%. The 50% where the diet has no effect.
She was on the diet for four months. During that time, her seizures actually increased in frequency and intensity. She went from having tonic seizures (where her arms and legs go stiff) to having tonic clonic seizures (where her arms and legs stiffen and then start jerking – it used to be called a grand mal seizure). She also dropped in weight from over 20kg to 18kg – and started to look quite thin.
I don’t think the increase and change in seizures was caused by the ketogenic diet. I think that it was just part of Miss Z’s seizure cycle (we have good control for a period of time and then she goes steadily downhill). She also had a number of health problems during the four months, including a central line infection (which eventually resulted in her portacath being removed), a nasty chest infection and gastritis (which caused her to vomit blood). My (completely unprofessional) opinion is that the diet just didn’t make a difference, which meant all the other factors contributed to an increase in seizures.
By the end of four months, it was clear it hadn’t made any difference. In the end, it wasn’t a huge disappointment. I think the realisation that our diet experiment had failed crept in slowly over the course of several months, so that by the time QB and I decided to take her off it, we had already overcome any feelings of disappointment and sadness. In the end, I was just glad to not have to wash bottles and mix formula.
Miss Z is now completely off the ketogenic diet and back on her usual (and much more nutritionally balanced) formula. Coming off the keto diet hasn’t made any difference to her seizures, which she still has nearly every morning.
One of my top goals for the diet was to try to wean Miss Z off some of her anti-seizure medications. She is on four different drugs (Epilim, Keppra, Topamax and Frisium) at the moment, which is a lot of drugs affecting one small girl’s brain.
Yesterday we had an appointment with Miss Z’s neurologist. We discussed reducing her medications and the doctor pointed out that there is no sense keeping her on four drugs if she still doesn’t have seizure control. So, we’ve come up with a plan to try to stop some of these morning seizures (by increasing one of her medications) and then begin to wean off another medication.
It feels good to have another plan. Of course there is no guarantee that this plan will work either. But there are never any guarantees with Miss Z. And we can only carrying on trying until we find something that works.