Hi my name is Chamisa,
My son (4 ½) has recently been diagnosed with temporal lobe epilepsy. After years of trying to figure out “what’s wrong with Aidan”, and after years of being told that he just has a bad case of ADHD, he began having focal seizures in his face accompanied by paralysis. We had seen a neurologist 2 years ago who told us that his staring spells were probably nothing more than toddler self-soothing (he used another word that is edited out on this forum), and that any behavioral problems and lack of response to ADHD meds for extreme hyperactivity were just coincidences. Basically we were told “Aidan is just a hard kid and there is nothing we can do for you.” He refused to do an EEG and sent us on our way.
Now that he has started having obvious seizures they gave him an EEG which indicated that he had temporal lobe epilepsy with some rolandic features. They started him on Tegretal. Within six days he was dizzy, disoriented, and had difficulty walking and standing. Blood tests showed that he had excessive levels of tegretal in his liver. They switched his medication to Trileptal. At first it seemed okay, after 2 days on the meds he had a seizure, so they upped his dose. With the higher dose, his medication seemed to be making him excessively hyper and aggressive. The doctor felt that while it seemed counter intuitive it might be worth upping the dose again just slightly to see if it gave a better response. Well that didn’t work. By the next day he was so hyper and aggressive that he had to be removed from daycare.
I guess my questions are:
Are hyperactivity and aggression common side effects to these meds?
Will things get better over time?
Should we switch to a different medication?
If so, which are better?
Has anyone had similar experiences?
Does anyone have any advice for us?
Thanks and sorry for the long post