Hi G.,
My heart goes out to you. I have a daughter with epilepsy, she too has grand mals (now called tonic/clonic). These are not the prettiest seizure to witness, but just so you know, they do not feel a thing during the seizure. It's only afterwards that they will feel any pain, like from biting their tongue, or muscle pain. Your son is lucky to have an aura prior to his seizures(sz) so he can let y'all know when one is coming. My daughter doesn't always have an aura. Also, there is sometimes no reason as to why someone develops epilepsy. With my daughter, hers is hereditary.
Seizures during the night are called nocturnal seizures. You can find out more information about these and see if this is what he is experiencing. Also you can find drs in your area at the Epilepsy Foundation.
http://www.epilepsyfoundation.org/
If he's had an MRI and an EEG done already, then that is good. If the MRI comes back clean, that is good, since an MRI is done to check for any abnormalities in the brain. With an EEG, that will come back clean unless he is having a sz while hooked up to the machine.
Do you keep a journal for him? Just a notebook will do. Write down everything he eats or drinks. Is he getting enough sleep?? Since he's only a year, I'll add to write down tv time as well, just in case. Especially keep track of all this on days he has sz. When he does have a sz. Write down what he did prior to having one, as well as how long the sz lasted and how he was afterwards (post-ictal period). Take this journal with you to all his appointments, it can help his dr possibly find out what is triggering his sz.
Is he on any meds? If so, there is a trial period for up to 6 weeks to see if the meds are working, then 6 more weeks for any dose changes. If he is on meds and needs blood draws to check his levels, make sure to write it all down in his journal. The journal is the best way to keep track of everything to help your child. You are your childs advocate. Keep searching for a dr that will help him. Second or even third opinions are common. Have you tried an epileptologist? These are drs that specialize in epilepsy. I finally have my daughter seeing one.
If you would like to get in contact with me for more info you can email me ____@____.com Just put mamasource in the subject line so I don't delete it. Also, I usually hang out on WebMD.com on the Epilepsy Boards. We are a family there, we help each other out. There are plenty of us moms that have kids with ep. and also people with ep. so we do know what you are going through.
T.