Logan saw his Neurologist today. I told Dr Maller that I did some research online and found these 2 seizure meds and said maybe one of them will work. I just gave her my opinion. So she picks one and it is Onfi, it has a ton of side effects all being bad, but every child is different. I am no doctor, I am just a parent concerned about my child. I just don't want him drugged up all the time. I felt like she gave me what I wanted and didn't really put her two sense in. I felt like she is tired of dealing with me.
She told us to get Logan's blood work checked for his Lamictal levels and ammonia levels to check his kidney function and a CBC panel. We got that done today and should get the results by the end of this week. He will start his first dose of Onfi Friday night of 10mg and work his way up to 20mg. She wants to keep him on the low dose of depakene and Carnitor and slowly take him off of clonazepam because Onfi and clonazepam are both benzodiazepines which will basically knock him out and really drug him up. So we will see how things go next week and how he tolerates the new drug.
I did get a call back this morning from Children's Hospital in Los Angeles. I was so excited to hear from them! I have to fax them some paperwork regarding Logan's medical history and then I will get an appointment.
Thank you for all of your prayers. They mean so much to me.