Finding the right medication or combination of medications takes a lot of experimentation. We experimented for over twenty years. The drug that works for Rose had not been invented yet when we started.
You must be your child’s data collector. The doctor’s may keep records of the drug dosages, but you see the effects of those drugs. This is too important to leave to memory alone. Keep good records of mood changes, appetite changes, sleep issues and learning issues, as well as side effects and seizures.
This first chart is titration instructions given by her neurologist. This was helpful in filling Rose’s pill organizer. I could mark each day off as I filled the boxes.
This second photo is a chart we made of all the dosages tried and the results of each combination. As you can see, there were many changes. The side effects and seizures continued no matter the levels. This chart helped convince the doctor that this was not the drug for Rose. Keeping thorough records will prevent retrying combinations, especially if you switch neurologists at some point.
The last chart is a ‘Year on a Page’ that has all medical events for that time period. One of these is at the front of each year’s section in a series of notebooks we have on Rose’s treatments. I can glance at this page and then look through that section to locate specific events as needed.
PLEASE keep all your records together. You can sort them when the struggles diminish, but at least they will all be where you can find them when you need them. We kept everything in a cluttered file drawer. It is still a mess, but everything is in there…somewhere.
I am so glad we did this. I firmly believe our records helped get Rose to the right drugs. Only you can see the whole picture; medication dosages, side effects and seizures. Keep track of it all. It will make a difference.
Seized on an Island will be posted on Saturday, May 29, 2021
Seizure Mama and Rose 