We went up to Chicago today to see the epilepsy doctor & she was awesome. She took a very detailed neurological history from birth to present. She ordered a 24 video EEG and a ct scan. Jordan will be inpatient next week for these tests and other monitoring. If there is an opening in the epilepsy center at the hospital Monday or Tuesday he will be admitted then. Doctor said if there is no opening, she will admit him Wednesday. I thought she said he may be there a week however, I may have misunderstood. I am unsure of the length of time he will be there. When the office calls next week I will ask.
I feel very relieved that his seizures are being investigated. The seizures have become worse, and more frequent and the Diastat is starting to lose it's effectiveness. She also gave me a plan to care for him until his testing next week. She changed his meds a bit, and added another medicine to give if he does have anymore seizures over the weekend.
After the testing, we will start to work toward taking him off the phenobarbital (which makes him sleepy) and onto other seizure medicines which should be more affective for his type of seizures & wont make him so sleepy & drugged. There are also other treatment options discussed but wont be looked into further until we have more information next week.
As I said I feel very relieved that someone is looking into his problems & looking for a solution.
Keep saying prayers for Jordan. He just wants to be sociable and play again without having to suffer a seizure, and without being to tired to play & interact. I will post info as I receive it.
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