What a week this has been. Tuesday we went in to see his neurologist so they could put the electrodes on his head to do a 24 hour at home EEG. Wednesday we went back into the office to have everything taken off and found out our followup appointment is not until August 4th. Because Dr. Maller is out of town for 3 weeks and that puts her behind. And it's ridiculous that no one else in the office could speak with me regarding Logan's test results. I asked them to have the test results mailed to me and I should have them in 2 weeks.
After that appointment we headed on over to see his cardiologist. It was a follow up visit from his hospital stay. His heart is looking good, his heart valve has a mild leak, so thankful it has not gotten worse.
Thursday we went to see Dr. Ahad who is a neurologist to get a second opinion. She consulted with us for an hour, what took the longest was Logan's medical history which I provided all of his records for her. I was telling her that I am tired of seeing him drugged up and I was honest with her and told her that Thursday morning I did not give him his seizure meds he was so happy and playful that day even his therapist notice the difference. I also said I don't follow up with Dr Maller until August 4th. Dr. Ahad said I will consult with Dr Maller when she comes back in town and that they will work together to get Logan's seizures under control. Dr. Ahad also mentioned she does not want to take any patients away from Dr. Maller and that they have consulted many times in the past regarding other patients. So for now until we see Dr Maller she is slowly lowering Logan's dose of the Trileptal from 7.5 ml twice a day to 5.0 ml in the morning and 7.5ml at night. Then after one week do 5 ml in the morning and 5 ml at night. Then when Dr Maller comes back she will take him off of it completely and possibly put him on Depakote. And we also talked about having surgery and putting a VNS in but most likely would not be able to because he has heart disease. She said depakote does have strong side effects and the major one is liver damage so he would always have to have blood work done. And because it is a strong drug it would outweigh the Lamictal. I asked her if it causes Liver damage then why take it at all? Her answer is it works and very well.
So we have to take the good with the bad and just get his blood tested all the time. She also recommended that Logan see a geneticist again. The last time he saw one was when he was 11 months old. And since there is only one geneticist in the state of Nevada it is over a year wait. So we are on the waiting list. Logan does have a follow-up with Dr. Ahad on Oct. 1st