Post Edited (teensmom) : 7/12/2005 1:06:04 AM (GMT-6)
Post Edited By Moderator (~Jennifer~) : 7/12/2005 11:49:11 AM (GMT-6)
Post Edited (teensmom) : 7/14/2005 8:26:12 PM (GMT-6)
Keeping a symptom "diary" really helps in developing a medication schedule that works for your daughter (with her MD's imput of course). Pick a symptom. In this case "memory." Make up a scale of 1 - 5 or 10 and define them. For instance in a scale with 1-5, with 5 being the worst day for this symptom, 5 could be defined as 4 or more "serious" memory lapses (forgot a pot on the stove, forgot MD appt., forgot midterm test, went to the school bus stop on Saturday, etc.) Keep the master scale where you can check it and adjust it over a few weeks. Pick a color for this symptom (gray would be a good one ) Now, using a monthly calander (one that does the month as a page with squares) you can keep track of the symptom by putting a gray number in the corner of the day.
You may have three or four major symptoms. This is just an example of two. Insomnia (blue) scale is broken down by hours of sleep for that night. Irritability (red) scale needs to be measurable. 1 - uncomfortable but able to discuss it. 2 - edgy enough to avoid interaction with family or friends 3 - intolerant of siblings, classmates 4- snapped at family members to excess with what "appeared" to be unequal provocation 5 - serious argument (note topic)
Numbers for each are recorded at the bottom of each calander square. Important! Note any changes in meds in the squares (doses, additions, or if meds are late or missed).
Progress is often over days, weeks and months. At the end of the month, for each color coded symptom, you can look at numbers at the end of each week. Add the days up and divide by the days. While one or two really bad days can give the impression things aren't improving...
The diary can be used to better communicate with your physician on the symptoms that are most troubling and positive improvements can be reported. "I'm having trouble sleeping" does not have the same impact or give as much information as saying, in the past month, I'm averaging only 6 hours of sleep per night per week, when last month, I was sleeping an average of 9 hours.
Another use for the diary is this. In women, from puberty on, there is a replicateable correlation between pre menstrual hormones and frequencies of seizures. It's very possible to, once this is established in a pattern (for each woman pre menstual exacerbation of the seizure disorder and lowering of the threshold, in days may be as few as two or as great as 8 prior to the onset of one's period.)
Having a neurologist or neuropsychiatrist that deals with epilepsy and who has a nurse clinician as part of the treatment team is a real asset to help go over the diary. For instance, if you are not getting enough sleep, all the meds in the world aren't going to keep you seizure free. It may take someone with an objective analytical view, to see certain patterns. If you have serious memory problems that are time of day specific (all incidents in diary concerning forgotten dates involve appts. in the morning) a number of solutions might present themselves. For instance, going to bed earlier, spreading out the night time dose through out the day, and one of the simpleist, stop pretending you're going to wake up a different person and make appts. in the afternoon if at all possible
Oh, and in the case of people still in school, memory is a definite problem and can qualify for a learning disability that necessitates assistence. It is well documented. Solutions can be found. Longer test times as well as person affected, in the case of "fill in the blank" tests, being given multiple lists of words with the words contained in large groups, from which to choose. The inability to find the right word is common. We can, usually, *recognize* the word we need from a list. Also, test results (as in diagnostic tests, not school tests) can be variable depending on the day it's taken.
Sorry, I've rambled... oh, by the way, did I mention hypergraphia being a serious trait of my seizure condition lucky you, huh?
Don't know if any of this helps....
Post Edited By Moderator (MandiAnn) : 8/17/2005 1:57:16 PM (GMT-6)
So sorry, it took me so long to reply. Haven't checked my e-mail for at least 2 months, lol. Things are going so well for my daughter, we have really been actively making the most of the summer. Alas, school started last week, but even that is a bright spot!!!!!!!!
I'll just give you a quick update. After months of asking for a change of meds, or lowering her doses, they finally agreed. Hallaluyah!!!!!!!! Apparently she was overmedicated. We dropped her Depakote from 1000 mgs. to 750 mgs. And saw an immediate improvement in her memory and her appearance. Now she isn't sluggish and she's bright eyed again.We also lowered the lamictal. Band camp started "2" weeks before school started, 6 hrs. a day 3 of that in the hot august sun. Dr.s gave me permission to up or lower her meds using my own judgement. She has signs (in her sleep) we can read to see if the blood level is ok or dropping. Sometimes I upped the depakote. We did ok, feel so much more in control. All we have to do is pay attention to the signs. Now that school started, I only give her 1000 mgs. of Depakote on Wed, Thur, and Fri. 750mgs. on other days. Thursdays and Fridays are long days for her. School, Band 3 Hrs. & homework, football games on fridays.
To make a long story short, the same dose that stole her memory in the spring when she was less active, doesn't affect her memory when she is more active. Apparently her body is using it.
Thanks so much for caring, you have some good ideas! You can ramble all you want, apparently I do that too!!!! lol Keep in touch!!
I had my first seizure last Sat and am on Lamactil working up to a full dose. I too am having memory problems and I am 44 years old. I had an EEG on Thurs. and have both right and left side "irregularities". I have some speech and writing difficulties. Nothing earth shattering but still more than I can get used to in one week. The meds make me tired and very forgettful. Do I just need to get up to speed or what? What is the I.D. of choice that I can wear when I am out on my own. I have not been alone since my siezure and am a bit frightened.