New Neurologist :)

Well, our appointment with the new neurologist was bittersweet today.  After waiting an hour for our appointment, she spent over an hour and a half giving us her undivided attention and was the most knowledgeable neurologist I have met with the most professional attitude!  Going over patient history she discussed every test JW had and explained the results and compared them.  We now have a better understanding of everything.  Unfortunately, here comes the bitter part.  I have asked every neurologist this and she is the only one that has given us a direct answer and thorough explanation.  I asked about the scar tissue, which she explained the exact location of it, and said that it was caused by the prolonged seizure.  Therefore, since JW's first seizure was an atypical febrile seizure (lasted 8 minutes and most are 30 sec to 1 minute), he should have been prescribed diastat.  His next seizure was 30 minutes long and caused the scar tissue which in turn has caused epilepsy.  As parents this was hard to swallow because we were told he just had febrile seizures and they were common and he will most likely grow out of them by age 5.  Now, since he didn't get the proper treatment from the beginning he has scar tissue that will never go away and developed epilepsy.  He will never "grow out of it" as we had still recently been told he may have a chance.  On the plus side of things she is adjusting his dosage of Keppra and said that it is possible for him to go a year or two or even more without having a seizure with proper medication,  but will probably have breakthrough ones at some point.  That would be due to trigger factors, him growing and adjusting medicine and so on.  So far we are happy with this Dr. and we will stay proactive on keeping them controlled.  He can go to school play sports (except football) and do boy things like we have always hoped.  We will just always have to lookout for a seizure and be prepared as they can be so unpredictable. Because of the unpredictability of them we are relieved to be of the wait list for a service dog and can't thank all of our supporters enough for helping us raise the money.  We didn't know all the risks in the beginning and were not given all the proper information and now we spend hours researching everything.   We hope you will share JW's story because knowledge is everything.  That is the reason we are open about JW's story, in hopes to connect to others and help in any way possible.