Hello, I have seen a few of you on here that have said you keep track of everything. What exactly are you keeping track of and how do you do it? My dd has "E" but I have never really kept a record of anything. Her seizures are so quick to begin and end, I sometimes don't know if she has had one or not. And her characteristics when she is having one are a little different so it is hard for me to tell if it is her excitement at something, or if it is a seizure. She waves her hands up and down really quickly. Occasionally, she will bite her wrist, or jump up and down. If you don't know she has "E" you might think she is just excited. I have a hard time telling the difference myself sometimes!! lol

So anyway, didn't mean to ramble on...just wanted to know about record keeping????

Thanx!
Lindy

i keep my own record of things and what i do is i write down every seizure i have the date i keep track of the meds i have been on the dosage the side effects ect. and i also have wrote down all of the drs i have seen. included in all of this is my eeg's,mri's,video eeg's and whatever else testing i have done i wrote down the dates and places of where the tests were performed.i have a file on my computer and i also have a back up on disk everytime something new happens i just add it on i hope this helps you i know keeping this record has helped me out a great deal when i had questions about tests it was easy to go in and find out where it was done and who read it and what the results were i think this is great my mom actually started doing this long before i knew about it she was keeping a record the whole time and i never knew it until about 1 year ago i was dignosed with E in 97 at 15 years old again i hope this helps you and also something else i do is every once in a while i request a copy of my medical records from my drs and i have all of those in a file i find that that too has also helped a great deal

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mother of 3
ages 4,3,and 1
my pride and joy

diagnosed with epilepsy jan. of 97

live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow

I keep copies of as many tests as possible (generally have dates on them), and if I change doctors, I ask for a copy of my entire chart.... this has been very helpful when changing docs (and with any job/insurance change or move to new city, that's happened). I keep track of seizures right now because my doc is still in the process of doing HER evaluation.... otherwise, I've just kept track of the usual progression of the seizures to notice if anything changes. If I've had a bad one, or begin to have more than the usual one or two every 10-12 months, I keep closer track.... otherwise I just find it too monotonous and dull, and taking up time from something fun.... but for those who have frequent seizures, I can see where keeping track of all of them would be very helpful to the doc..

Thank you for your replies...I am sort of on the right track. I do get copies of all her test results, and I do keep track of what meds and what dose...but I guess I need to get a small calendar and keep track of the seizures. She had one yesterday...first one in 4 months! http://www.healthboards.com/ubb/frown.gif I knew it was too good to be true. Oh well, life goes on!!

Lindy

Lindy,

I'm so sorry sweetie. I know how difficult this must be for you. It is so hard to have it and then have to deal with a family member who has it. I can only imagine. Your in my prayers.

I keep records of the same thing that everyone else said that they keep records of except I put down what was happening in the day and what led up to the 'event'. My doc at one time wanted me to keep track of what I was eating and when because he thought that if I wasn't eating enough or to much that could be a cause. It wasn't but I did it. I just write down how I felt, how I feel now, and the postictal state the next day. Stress happens alot for me but I think that I get the anxiety as a warning to a seizure and not the anxiety gives me a seizure. I get stressed out about absolutely nothing the afternoon before a seizure.(I have my seizures at night usually) I was only able to figure that out by keeping a record of the before, durring and after. I know it is hard to keep track of someone elses if they don't tell you. How old is she? Does she know if she is having one or HAD one?

I hope things work out. I know 4 months is a long time but think of it this way, it could be a lot worse. Mine are 3-4 times a week....hmmmmm.

God Bless you honey,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Hi Lindy,

Sorry, I am so far behind of posting to those I want to add to it's not even funny...

We use a day runner to keep track of Jake's. Jake's activity is not mistaken, we know even if we didn't see it ourselves. So your's would be a little different since her activity is different.

We enter on the day he seizes, the length of the sz, the day runner we use also has notes pages that we have placed behind each month. In the notes section we will put the length and any notes, was his aura different, was it a CP only, if it generalizes was it to the tonic phase only - if not, was the clonic phase harder then normal, was it very light over all, was his postictal different.

With Jake the length of the seizure is a big entry since he stops breathing during the CP part.

We also note any first time foods. We also include family notes: when we company, if the older kids are coming and going, did we go to the beach etc.

I want to take the day runner and place it all in a spreadsheet so I can see it in data form. Thinking a plot chart with sz activity with med changes over laid. I know I'm a data freak... but I keep thinking that there could be clues that we are missing having it in word format only.

The other thing I am working on is putting together a medical resume. It will include his general condition, the Dr's he is currently seeing, what meds he is taking, what tests have been performed and who has those records if we do not. We would able to take this with us to any new Dr. and they have a complete over view while they wait on file transfirs. I think we may keep a copy in the glove box of the cars in case we have to do an ER run, that would be one less thing to have to remember under stress.

Hope that helps you out some, how's she doing?

Even if I haven't been on as much you have been in my thoughts and prayers.

Lisa and Kids