Myoclonic Seizures

[Faith]

My daughter has finally been analyzed with having Juvenile Myoclonic Seizures even though she is 34 years old.  After taking Depakote for the past twelve years, the past 6 months has left her body totally toxic and a weight gain of 70 pounds with no letup on the seizures - only worsening.  After this conclusion this past week at UAB Hospital, and being introduced to a new medication, Zonagran; many questions are puzzling.  
The doctors have indicated this is a genetic defect of Chromosone 6, and wonder since this is hereditary, does this come from the father's side or the mother's side of the genes?
I have also gathered information on the web indicating that this disease will eventually turn into dimentia.  Is this a long process, or is there any stats on this?  Why has it taken this many years to be correctly diagnosed?  Does stress contribute to this?  What can be done for the depression of this newly acquired information?
This may sound odd, but as a single mother of two, she is most concerned about her ability to ever drive again.  She is trying to work and function under all of this, supporting herself and children.  Any advice in what a mother should try and do?  Should I move close to her?
Thank you in advance.

[CCF Neuro[P] MD, RPS]

Dear Faith:

I am sorry to hear about your daughter's epilepsy.  The range of onset of JME is 8-30 years of age with most patients begin having the epilepsy begin between 12-18 years of age.  The seizure activity is usually worse upon awakening, some people have their myoclonic jerks and these are brief while others have generalized tonic/clonic with theirs.  Seizure activity can be made worse by alcohol, fatigue, lack of sleep, and some with flashing lights.  Each patient is different.  Usually, the seizures are well controlled with valproate but some are not.  Zonegran is a good second choice, as well as lamictal, Keppra, or topiramide.  The seizures are usually life long, and most of our patients do not have dementia, but are high functioning or normal.  Although a chromosomal defect has been found on chromosome 6, the actual gene has not been fully elucidated and there is no family history of epilepsy in approximately 50% of patients.  I think this means that although there is a genetic component, many patients will be the first in their family to have the disease as they represent a new mutation or there are environmental influences that may play a part in the disease (or both).  

I cannot tell you why this took so long to properly diagnose.  As far as you moving closer to your daughter, that is a decision you'll have to make.  Since fatigue, lack of sleep, will worsen the seizure activity being a single mother with two children will play a part in her epilepsy.  Help with the children and the daily part of living would lessen those factors for your daughter.

I do hope that the new medication will help with seizure control.
I hope I have answered some of your questions.

Sincerely,

CCF Neuro MD

[Faith]

Thank you!  Your information was very enlightening to myself and my daughter.  We will continue to work on her quality of life as being one that is rich and rewarding in her choices.