Update

About 8 weeks ago we were able to see a Neurologist and he started John on a new med and took away one of his other medication that didn't ever do much. We have seen a huge improvement so far. He no longer has 45 min repetitive seizures and he only has a seizure a week..His seizures have changed a lot, and you wouldn't even notice that he had one( they only are lasting 5 to 10 seconds). We went to the Neurologist again a week and a half ago and he increased John's dose of medicine, he is already at the max dose but he said some people just need a little stronger and then they are good to go.. Well, John has had one seizure since trying the new dose so we will see what happens.

We are feeling super blessed about this and are very grateful for a Neurologist that actually knows what he is doing, and has seen John's specific seizures. But, we just wish he didn't have the side effects from the medicine... ( Double vision, nausea, and feeling disconnected from his body) I hate that he has to feel that way. Life has felt so much more normal, I can't even remember the last time I saw him have a seizure. I was having some major anxiety issues because all of this ( watching my husband have 5 plus seizures a day was taking a toll on me), but since the seizures have been controlled I have felt very at peace, but then I feel bad because John has to deal the horrible side effects. I asked the doctor what if the extra dose doesn't work then what do we do? He said we will Just play around with Johns meds until we get 100% control with medications.