we have a sheet that the nurse/docs drew up. if you like I could either get one for you or scan on I have. it is really handy as if you write it all down(everytime) it really gives the docs a true picture.
dd would have what I called a cluster. about 5 small 30 seconds - 1 min, then wham a biggie over 5 mins. so I would have to give her rectal pharaldahyde. tbh I would be glad when she had had the pharaldahyde as I knew I had a least a day of no worry, may be the meds she is on are controlling the fits. dd towards the end started having odd ones, she would be totally aware and if I got the pharaldahyde out she would scream, so I would wait and she would come out of it herself. I spoke to her doc and she said this was where the meds were controlling it to an extent. could this be happening with your dd?
Both my daughter AND I have epilepsy, be aware that seizure types and patterns can change with different meds & the age of the person. My daughter was a year ago having complex partial seizures, now she is having somple partials and myoclonic seizures as well. Does she have a pediatric Neurologist yet? If so, and you can't speak to the Epilepsy nurse, I would advise the Neuro of the change in seizure types. If not, then definately tell the pediatrician.Good luck with sorting this out.
OH and if the sheets they give you aren't big enough, buy a cheap page-a-day diary, I use one of these as a seizure diary, one for me and one for my daughter. for most seizure types, you can abbreviate the name, so it takes up less space, i.e. CP for complex Partial, SP for Simple Partial, MYO for myoclonic, TC for Tonic-Clonic, ABS for Absence and then just add how long, i.e TC/4 min, and brief description of behaviour before & after sz. If you have to give emergency meds, shorten too i.e. 5mg/CLON/22.30 (for clonazepam given at 10.30pm) Hope that helps a little?