Update on the neurology appt yesterday.

Hello and thanks to those who emailed me asking about how Trix's appt went with the new neurologist yesterday. So I figured rather than email everyone seperately I would come up with a blog on it.

Hubs really likes the new Neurologist. He just felt like he was a better fit for our family and did not brush off our concerns. the last one had a little bit although he was good. Anyway Hubs came back with a mixed bag of results. I saw mixed bag because really it is a big mixed bag of emotions for me.
Trix has had more seizures recently then even Hubs and I realized and let me tell you I am always watching him like a hawk to the point Hubs keeps telling me to relax I am not doing him any favors. I know he is right but to be honest it is hard to just turn your emotions or sixth sense off with a switch. Anyway when describing how Trix has been lately especially over the weekend the neurologist said more then likely he had at least 2 seizures on each day. The issue with Trix is most of his seizures are not the "tonic clonic" like most people think of where one is shaking, and falling to the floor etc. His are more what they call "partial seizures" where he zones out, sometimes he gets really whiny and says he does not feel good but cannot tell me what does not feel good etc., this weekend it came out that he was just plain out of it...almost like he was in a funk. He did not want to eat dinner which is very out of character for Trix...he is ALWAYS hungry. lol But in any case he basically had 2 back to back seizures both Sat and Sun in the afternoon and it took a long time for his brain and body to reset. As I looked back to all the days I kept record of how strange he was acting I realize he has had a LOT of seizures lately. The mixed bag of emotions comes in where I am in one sense somewhat relieved to have my concerns validated, but frustrated and disappointed that he has been doing worse and not better. I know I should be grateful that he is not having 10-20 tonic clonic shaking seizures every day like some people have to go through but ...well I am just a mom who does not want to see my child like this at all.
So we got Trix some new medicine which the main side effect is it will make him sleepy, the second "possible" side effect is gall stones. Sheesh that is only a possiblity i need to make sure he stays hydrated and he should be ok. However he will be taking both the medicine he is currently taking plus the new one for awhile as I am supposed to wean him off the first medicine. Apparently you cannot just stop the medicine. For the next two weeks he will probably be very sleepy. I have to take him back to the neurologist in two months. If after a couple weeks the new medicine does not work, then we have to try one more medicine. Truthfully I am praying that one of them works because if the 3rd medicine does not work then we are looking at Brain Surgery for it. YIKES. I am not prepared for that. I of course will be getting 2nd and 3rd opinions before it comes to that and I know they can do some great things with surgery these days but the thought of my baby on the table having his (in my opinion brilliant) brain being operated on is not the greatest thought in the world. However I always as a mom go to the worst scenario lol. I am working on just focusing on trying new medicine instead and hoping beyond all hope that one of them works for him. He is getting to the stage now where he is really frustrated with all his seizures, and keeps asking me "mommy can we stop these seizures so I can feel better?" That tugs at my heart. I went to an awesome ladies thanksgiving night out last night for our church ladies, and was talking to a friend of mine who is also one of Trix's helpers and she told me that when he was in church on Sunday he asked her on his own if they could pray to God for his seizures to stop. See he is such a bright boy. I think what bugs me most is that he is more and more aware of his seizures and is partially conscious during them so he is remembering them and the fact that i have no control to stop it or fix it is the real issue with me. Oh well on a brighter note this new neurologist is really good and I did get some validation of my concerns and I at least have a few more answers then I did before which is nice. Ok on that "uplifting" note lol. I need to go make lunch for the kids who are all staring at me wanting to know when they are going to eat haha. I promise from here on out that I am going to try and post more happier posts.

Maybe tomorrow I will post more about the awesome Thanksgiving ladies night out at church! The guest speaker was wonderful and it was really great to just have fellowship and of course food. :)