Well I'm not sure what we have all answered being here. I keep asking myself what good came out of this. I am happy that we are off of one more medicine and that he doesn't seem as "drugged" as he did before. I am happy that we got a seizure while hooked up to the EEG. Beacuse of that we found out that he has myoclonic tonic seizures. But was it all worth it? I keep asking myself and I keep getting different answers. (Yes, I am talking to myself and answering myself!!)
I feel like we came on 4 medicines and are leaving on 4 medicines. We came having seizures and are still having seizures. We still don't have an underlying cause and I'm not sure we ever will. I wish we could have gotten him on a better dose of medicine before we left too. I'm so scared and nervous that we are just going to be chasing meds again. I don't want to call the doctor in a week reporting we are still having seizures and for him to just increase meds. I don't want to go back to that feeling of always increasing or adding meds.
I have so many concerns and thoughts running through my head. I went back today and started reading some of the first posts. I also started reading more of the information about Jayen's original diagnosis of Infantile Spasms. I remembered reading about how catastrophic this really is and wondering where do we fit into all these statistics. Are we going to come out of this as a pretty healthy normal kid? What will school be like? What will he be when he grows up, are things unattainable now?
We are hopefully leaving tomorrow with a few plans in place. We will be leaving here on 75mg Topamax twice daily, 2 mL Klonopin twice daily, a B6 vitamin twice daily, and a new increasing schedule for the Lamictal.