On Monday Caspian, my dad and myself went to our hospital for overnight telemetry (his other super grandparents came later). Telemetry is EEG monitoring of brain waves over time. Caspian was measured up and dotted with red texta. He had 21 electrodes glued to his head and 4 on his chest. Then he was wrapped up in bandages to prevent his little fingers from tearing them off. That was at 11 am.
By 9 pm he had failed to have a nap, the melatonin I had given him had worn off and he had ripped the bandages off 4 times. He and I were wailing in distress. I called it off. Last year he stayed up until 12am. I wasn’t doing that again.
Luckily we still managed to get some nice information on the little chap and our neurologist, David and I got a plan together. Caspian is changing drugs and he is finishing the Ketogenic diet and starting the Modified Atkins Diet, MAD.
For my global friends in the know, you understand how incredible and momentous this is. It is FREEEDOM. Little counting, no fasting between meals, unlimited fat and more protein- we can ad lib. Breakfast out, food off communal tables again & no panics when Caspian refuses to eat. Hallelujah!!!
What amazes me has been my response. Joy. I’ve been dancing in the kitchen with utter abandon. Until the pressure was off I had no real idea how consuming and intense this diet has been. Please don’t mistake my relief for regret as it has been worth it. I had committed in my mind, planned, to do the ketogenic diet as long as it took, much more than two years if necessary. Sadly Caspian seems to be in the group of kids that improves on the diet, but isn’t seizure free. The modified Atkins diet gives him the ongoing support of some seizure control and protection but in a more forgiving manner. The rigidity & tyranny of counting every scrap of food is gone… a collective sign has gone up in our house. Caspian has stayed in ketosis this past week and had only one seizure so things look good. Surprisingly he is eating less, not more- other than the initial gorging of 3 fried eggs and 2 ½ rashes of bacon (fried in fat) on the first day. David and I have had little conniptions trying to adapt to this freedom… what should we feed him, how much fat??? It is a guesswork job. After precision for eleven months, guesswork takes getting use to.
One story ends and another adventure begins.