New TLE possible genetic disorder too

Hi, I have recently been diagnosed with temporal lobe epilepsy and after trying three different drugs in Hospital am now taking Lamictal. I'm and English 27 yr old living in France and after about 25 years of wiered symptoms always misdiagnosed I finally have my answers. I'm sure a lot of you know the feeling! It's been tricky going through years of tests or feeling psychotic. The diagnosis was confirmed by EEG in a hospital unit specialising in rare illness and at my time of arrival was in a wheelchair doctors were almost sure it was a disease called porphyria or multiple sclerosis. I am happy to know what's wrong but am also concerned as they believe the epilepsy is part of a rare genetic disorder( Idon't know which ones) and apparently I have a long wait ahead for the results. I have two young children my son Noah who is six is also displaying symptoms and is going for an EEG in a couple of weeks.I also have a daughter who is 5 and when she was born had a missing enzyme called tyrosine, it was transient. We all suffer with digestive problems too. Am feeling really scared and frightened so would really like to make contact with others who I'm sure have been through the same things. Thank you for reading! Sarah