So it has been almost a month since my last post. We returned today from yet another trip to Philadelphia. He continues to have seizures, not always daily, but every other day. Up to now nothing has really helped or stopped his seizures, and we still haven't found a reason to his seizures. Landon's doctor has decided to take him of Depakote, Levocarnitine, and taper his topomax. He will start on Rufinmide(Banzel) and we have started the process of getting Vigabatrin(Sabril). We also have plans of trying the ketogenic diet in the future, if the medicines don't work. As the doctor said, Landon is a hard egg to crack.
I can't believe our little baby is going to be a year in 3 short weeks...where did the time go? I also never imagined what the last 10 months have been like...numerous doctors appointments, too many medications, and trips to Philadephia. Everytime someone looks at him they say WOW he's a big boy, how old? When I respont 11 months, they normally say something about, Oh so your chasing him everywhere, or have fun keeping up...If they only knew that is my dream! Then I feel like I have to explain why he doesn't even sit up or roll over. I'm kinda sick of always explaining. We are blessed to have a wonderful little guy, but I'm ready to be done with this chapter, the seizures that is.
On a postitve note, Landon is doing well in therapy. We continue to go 2 or 3 times a week. He is almost sitting up on his own! I was so proud today, he sat himself up from leaning back on a pillow!!!! To us it is such a huge acheivement! My hopes are he will sit on his own for his 1st birthday, and we are working hard to get there!
Hope all is well with everyone!!!
I completely understand what you are going through. Ady used the Vigabitrin and it was the one that helped the most. You are a strong woman and mother.
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