En route ketogenic diet.

Jordan had his last steroid treatment last Wednesday. After two weeks of 40mg and 60mg prednisolone we ended it early. Thank God because it was miserable for everyone involved. A baby on steroids is no walk in the park. They are up all night, and constantly fussy.

We made the decision to start the ketogenic diet after it took over a week for Jordans spasms to subside with the steroids. That didn’t leave me feeling too confident this time around, however we were missing a key piece to this treatment working- vigabatrin. Jordan can’t take this medication anymore due to the side effects it had on his brain. Jordan had a repeat EEG a few weeks ago and it did show the hypsarrhythmia was gone which is wonderful, but its still an abnormal EEG. Of course, Jordan can’t be on steroids long term but he can do keto without it being harmful to his body.

On Monday we went inpatient to start the keto diet. This isn’t the keto diet that you have probably tried to lose some pounds. Its a true ketogenic diet with strict ratios that can have an effect on how frequent seizures occur or in some cases stop them completely. They have slowly been adjusting Jordan to diet and monitoring him closely to make sure his blood sugars don’t fall too low and he reaches ketosis.

Jordan will be followed by a dietitian who will teach us all we need to know about the 3:1 ratio diet. He will have a special formula where he will get most of his nutrition. So far he has taken well to everything we have given him. I was nervous it was going to be complex but once you figure out the measurements its just adding fat to most foods he’s already been eating. For example, pureed squash and butter.

I’m constantly praying that this will have an effect on his spasms because we’re running out of options. I have read great things about the keto diet and epilepsy- John Hopkins even uses it as a first line treatment. However, like everything else there is always the disclaimer “it doesn’t work for everyone”. Unfortunately, Jordan has fallen into that category for everything we’ve tried so far. That has made it difficult for me to remain optimistic so I’m just doing my best.

Sadly, I need to get rid of all the breast milk I stockpiled. At first this really upset me because I worked so hard to breast feed and pumped like it was my only job for months. However, it is what it is. If I can donate it to other babies all the work and time spent is worth it to me.

So wish us luck as we embark on this new journey to hopefully achieve some, if not all, seizure freedom.