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Teen Recently Diagnosed

Sun, 07/16/2017 - 20:18
My 15 year old daughter was recently diagnosed with Idiopathic Generalized Epilepsy. Her first tonic seizure was at 12, second 2 years later, then as of December of this year (2017) they were occurring once per month, in the morning, 1-2 days after her menstrual ended. She was misdiagnosed as fainting due to orthostatic hypotension until recently, her EEG was showing 3-4HZ poly spike and waves. The neurologist stated that they correlate with absence seizures on her EEG. However, there are no physical signs of these. As I've mentioned repeatedly that they correlate with her menstrual cycle, they are not taking heed to that. Prior to the epilepsy diagnosis, we found that she had a low vitamin D level and ferritin(iron storage). Since supplementing with iron and D3 we have not had any seizures since April of this year. Then we had an abnormal EEG in June and have started her on lamictal. At this point, I've spent endless hours on the internet looking for answers and I'm completely losing my mind. I'm afraid for her future. Any advice or positive words of hope, will greatly be appreciated!

Comments

Seizures normally increase

Submitted by Misjoey101 on Sun, 2017-07-16 - 23:39
Seizures normally increase around a period. My doctors have always claimed its because of hormonal increase. That's why I have been on birth control since I was 13. 

what kinds of answers do you

Submitted by Amy Jo on Sun, 2017-07-16 - 23:42
what kinds of answers do you think would help you? most people facing this diagnosis experience a feeling of complete lack of control so it takes time to understand that the previous sense of control wasn't real to begin with; there are few certainties with respect to life and health.as a parent I know this is stressful at first but parents are resilient and usually adapt (aka it will get better as you learn to cope). obsessing only on the internet is not so great (for you). does your local epilepsy affiliate have a support group or yearly conference that you can attend? do you have some activities that can help with stress like regular exercise or yoga?your experience sounds pretty typical from what I understand about typical absence epilepsy. absences are easy to miss as they are often super short, longer duration absences are often less frequent , so again, easy to miss. absence is not so usually complicated to diagnose as it if the pattern is seen, it's certain. there may be more question of what kind of epilepsy she has... JAE, JME, or ?? a good idea of which epilepsy may indicate her longer term prognosis but only in general terms, any person can vary. of course sometimes it takes a few years for figuring out a person's situation, there aren't always shortcuts on this journey, I'm sorry to say. It's not sure what you have absorbed  about absence epilepsy as reading, understanding and believing are not the same thing. absences are (usually) genetic with a complex variety of causes, most people respond to meds. hormones can lower or raise one's seizure threshold, so that's part of why some people have seizures associated with certain points of their cycle (not specific to absence, see catamenial epilepsy). some people use BC to help in such situations,  but note that some AEDs (like lamotrigine) can interact with oral BC and one's neuro and obgyn should both understand or one could have worse seizures, have a toxic reaction to meds, or become pregnant.epilepsy meds are usually started low and increased slowly and if one is stopping the meds are decreased slowly. lamotrigine is increased and decreased more slowly than other AEDs. it is not clear that your daughter would be at her target dose yet, depending on the schedule.our youngest was diagnosed with epilepsy bit over four years ago, took six months for diagnosis and treatment to be started so it's been about five years for us. initially only partials occurred but no seizures were on eeg at the time, just some IEDs and other evidence. atypical absence showed up a few years later on a multi day eeg after a fast wean. they are not the same as your child's absences. the generalized seizures are currently controlled with lamotrigine. 

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