Time for updated plots.
Nora is continuing to do well. We still get a little hint now and then that her seizure threshold is still low. She had a loud myoclonic seizure falling asleep last night, and I thought she was just a bit dizzy and weird yesterday. Just a little. But on the whole she is doing really well.
She protested going to bed the other night, telling me that she needs someone to sleep with her and that if she was alone it was really “tragic.” This morning she was pestering me to get out of bed and told me that I was “delaying.” Smart kid.
H,i I absolutely love your charts. Our 3 1/2 boy, Caspian, has had seizures since he was 7 months old. I used to manually chart his seizures but with the profound on going lack of sleep many things have gone out the window. We have just started on the classic ketogenic diet in late June and are seeing a change in his seizures, but it isn’t well charted. Can you suggest what software you are using? My dad is a now retired medical physicist I will put him to work on it! ( he has taken over recording the seizures as we haven’t been managing). Thanks so much
I kept the data and did the charting. I also tried to run several regressions against different variables to see what correlated with seizures. Ultimately I didn’t find much. It’s such a complicated system, plus the kids are changing all the time too.
I used Excel for record keeping and charting, and MATLAB for any analysis.
Sorry to hear about your struggles with your boy; it sounds pretty rough. Has the diet helped?
I spoke to my dad and he said excel was the way to go. He mentioned matlab too? I think. we used to chart a long time ago, but stopped. With the changes happening at present I wanted to start again. It seems to be really helping- not seizure free but we have managed to remove keppra and also 1/2 way off topamax so I am seriously happy. He seems to be developmentally better too. The diet is killing me, but I imagine it gets easier…
thanks so much for your reply
Hi Mary-Anne, Christy here. I just wanted to say congrats and good job! Now that we are 9 months into the diet, I would say that it is tough in the beginning, but once you climb the learning curve and have your tools in place, it’s less hard but it is relentless and exhausting. It adds work to every day, but you find ways to make things easier and get a routine. Get some go-to recipes that you can make in batches and freeze. It will make each day just a bit easier. I will let Ted handle the graphing questions, but I am so thankful that he did that for us. It helps my morale to see the graph.
Awesome to hear your boy is improving.
Excel will work just fine, plus it is very affordable. Should you or your dad want to do some technical programming or analysis, Octave is a nice free, open-source alternative to MATLAB. I adore MATLAB, but it is expensive.
Using a Google Drive spreadsheet would work well too.
I’m happy to talk programming and analysis later and share code if you like. In the meantime, I hope things continue to go well for you.
And yes, it does get easier. It takes time to establish routines.