Carsyn is still having seizures. His neurologist can't seem to keep them under control and it seems now that we've been there a few years this doctor has stopped trying to get them under control. and i'm tired.
You see, almost every doctor we have seen so far (neurologist, neurosurgeon, pediatricians) has said we would never get his seizures under control. All because of what he has. but I've seen kids with the same thing be seizure free. Why is it that Carsyn isn't allowed that chance? I won't take no for an answer, so we move doctors. This neurologist never said we wouldnt get them under control. In fact, he seemed pretty confident that we could get them under control. completely.
He did for a while. Carsyn was completely seizure free for a total of 6 months. That was it. Now that we have been with this doctor he seems to think we won't look for someone else. So every time i call I'm told
"well Carsyn is maxed out on all of his medications and we can't increase them anymore."
They want to add new medications to the mix of his already long list. I don't want to add more medications. I want to find the one that works. not a cocktail of drugs that will slow his brain down so much that he can't have a seizure. I want the medication that stops them completely. So when we were told about medicinal marijuana (without the thc.) We looked into it. As you know, I've met with the senator about it. I'm serious about trying this for Carsyn. It's not a magical cure all. but its an option for Carsyn. It's hope in the form of a tiny pill. It could get him off his other medications. It's hope for a better life for Carsyn.
When we first asked his neurologist about this he had told us they were willing to try anything to get his seizures under control. Then when his seizures were no longer under control with the medication he chose we asked again.
This time he laughed at us. He had a student in his room and they looked at each other and laughed.
I called back a week later and asked about it and was told that they don't believe in that in This hospital. So why were we given that hope in the begining?
I refuse to take no for an answer. So we are looking at a new neurologist. Hopefully this one will help us. Hopefully this one can get Carsyn off the Benzos that the last two doctors got him on. The benzos Carsyn has been on for nearly 6 years. The benzos that you can become addicted to fairly easy. The benzos that people need rehab to come off of....
The benzos that are known for killing grown men.
This is why we need medical marijuana. Not because it's something that gets people high. But because it's something that could Save peoples lives. people are dying waiting for this to become a reality for them. We got the ball rolling but its yet to become a reality. This could improve the quality of life for not only Carsyn but for thousands of others like him.
We're so close.
No comments:
Post a Comment