Keep a seizure diary for your child?

[erem]

Hi all,

Do most of you keep diaries of the seizures your child has?

I'm working on a way to simplify how parents of children with epilepsy log their seizures, but I don't know too much about how people do it already!

For example, do you keep an excel spreadsheet at home, or write in a journal? What do you usually log? Do you keep the log mostly for yourself, or because your child's doctor thought it was a good idea?

Even just anecdotes would be super-helpful =)

Thanks,
Erem

 

[RobinN]

I print out a blank calendar month by month. I use a color code system, and write down abbrev. for each episode. I make notes as to time of month, and nutrition that is off course. I use it as a catch-all for my information.
I then have made a year at a glance, indicated the episodes only in my color code. I can quickly see which months were better and go look at my notes to figure out what I was doing different.

HTH

 

[DanaC]

I did, we were lucky enough that things got better and so far we have stopped; I have to admit that I felt very nervous about doing it, yet thinking it might be helpful. I still note on a calendar with different colors peridos when she is ill/ has fever and how high/ takes paracetamol for fever/ takes antibiotics.
We used to have a diary, we would write short sentences on when she woke up, what she eat (especially if something new), how much she slept in the afternoon, and in general if something was strange, was she moody, tired; if we started her on some supliments/vitamins, trying to keep track of anything might be important if later on would want to find a possible trigger. It might be more difficult to follow a diary than an excel sheet/calendar, I would say both ways might help together on making a more thorough history.

 

[Bernard]

My wife keeps track with color coded symbols on a standard monthly calendar that is hanging on the door of our refridgerator. I prefer a paper solution to an electronic one as it is easier to use and reference.

I also don't care much for the hosted solutions that exist out there. People putting their medical history into a database that's hosted/owned by a third party have no guarantees that the data will never be compromised, bought or sold.

:twocents:

 

[Billyboyboo]

I keep a diary, well my friend does for me, I'm not a child, but I blank out during seizures. He just writes down what I do. :twocents: