Saturday, February 11, 2012

The Notebook

Finding a way to make sense out of a day in the life of a person with Epilepsy can sometimes be a challenge--why the increase in seizures today? what did we do differently? what have we changed? All of those questions become the most important questions in caring for your loved one.

There are many ways to go about organizing yourself, but clearly- keeping good records can do multiple things:

1. Give a caregiver a sense of direction in where the loved ones' baseline really is.
2. Allow better communication between the patient and doctor.
3. Increase the neurologists knowledge of the patient.
4. Better quality of care for the person with Epilepsy.

I have seen each of these things be true in our life with our son, Caleb.  In a sea of seizures, it is very difficult to see a pattern without knowing where a true "baseline" of daily activity really lies.  Sometimes 100 a day was the norm, but there were days when 1 seizure alone lasting TOO long was enough to know THIS IS NOT NORMAL.

Keeping good records let us better communicate with the doctor what was going on, what medications we had started/stopped/increased/decreased.  This is imperative on the part of the patient.  Many doctors are dealing with many, many patients--reminding them where you are, what medications you have been on, etc. is extremely important.  You may need to record Ketones, temperature, input/output, as well as seizure activity.  Also, you may need to record illnesses, runny nose, anything that can set off seizure activity.  If you know when it started, a doctor can better know how to treat the patient.

A neurologist is a doctor, an epileptologist is a doctor, both with TREMENDOUS amounts of knowledge and expertise when it comes to seizures.  However, NO ONE knows the child/patient better than the caregiver. Period.  You are the expert when it comes to your child/loved one.  So, if you are keeping good records- it is a win/win situation.  The Doctors get a better sense of the patient, they know quickly what you know- because you have recorded it.  There are no more "When did he have his last seizure?" questions that are responded to with "I don't know."  That should never happen.  If you keep records, you know, and when you are educating others about your loved one, they learn invaluable lessons.

The child/patient with Epilepsy can have better overall care because of good records.  For us, our Caleb shared many extra years with us because of good record keeping, great doctors who checked on us weekly, and because they understood Caleb, and became experts on his care just like me.  Our efforts kept him as safe and happy as long as possible.

My method of recording information was a simple notebook, each month/half month we started a new one.  I logged monthly totals in the back in a chart.  Now, a year later I have found a remarkable FREE website that assists you in record keeping and logging other medication changes, increases, decreases and the overall feel of the patients day.  The site is :  It is an amazing tool, and some day I hope to log all of Caleb's information there just to have.  There are charts/printouts that you can take with you to the Dr.'s appointment and it is forever saved online! 

A Notebook, Log, Online, whatever method you choose, keeping GOOD records can be of GREAT benefit to any caregiver.

Best wishes to each of you on your journey,
Remember each day to:

Be The Blessing,

No comments:

Post a Comment