Daily seizures

Jordan's doc called back & the earliest they can get Jordan in to the epilepsy clinic is September 5th. Too long in my opinion. He needed Diastat again yesterday. What appears to be happening is Jordan is now having seizures almost every day. The ones which require Diastat are more intense and last longer. After giving Jordan the Diastat, he sleeps for a while then wakes up sleepy but more alert. For one to two days following Diastat, Jordan still has the same seizures. They are just less intense & start to ease after 3-5 minutes. By day 2 after Diastat, the seizures gradually increase in intensity & frequency until day 3, then he will just have seizures & sleep if I don't give him the Diastat.

I mentioned to the doctors office that I think September is too long to wait. Doc said to split his phenobarbital dose so he has 30mg in the morning and 60mg in the evening. Although this may help a bit, it is still the same dose & the phenobarbital is obviously not working. I was told to give the pheno change 2 weeks, and check back with the office. Not acceptable to me.

I called every children's hospital with an epilepsy clinic in chicago & they all have even longer wait times. Today should be a good day for Jordan since he still has some Diastat in his system to keep the seizures down. I will try and get him out & about.

I have thought of taking him to the ER with the next bout of seizures come Monday, but they will most likely treat him with medicine (like I am doing with Diastat) and when the seizure stops, send him home with instructions to call his neurologist. I will be calling the office again Monday to try to get in earlier. I was advised to call the office everyday but I have already been told to give the medicine change 2 weeks.

He has not had an EEG in a while. I want him to have a 24 hour EEG, there are other meds and treatments for this. It is not fair that Jordan should have to suffer.