I told you yesterday about how Dr. N. was planning on stopping the clozaril for Thomas. He had been responding to several of my emails about Thomas' blood pressure and heart rate. When he came back with the email about stopping the clozaril, I knew that I needed to respond to it but it took me until the afternoon to accept what he was saying and respond. I always want to be thoughtful about my responses since this is Thomas' life we are discussing and while he and I work in concert to come up with a plan for Thomas, his first responsibility is to Thomas. I try, most times, to tell Thomas what we talk about because I don't want him to feel like we are talking behind his back and then pique his paranoia. He has been happy with the discourse so far which makes me happy because I feel like I am able to give him a voice that he can't seem to find for himself. So, yesterday afternoon I responded to Dr. N. about his plans.
I wrote to him and told him that I felt that stopping the clozaril was a good idea. As much as I am scared for Thomas' psychotic symptoms to increase, I know they can't kill him like a heart attack or stroke could from the high pulse rate the clozaril is causing. I want my boy around no matter what state of mind he is in. As long as he is here there is hope so if we must tweak medications then so be it. I think once I set my fear aside, what I really felt, and mentioned here I believe, is that clozaril is not for him. For me, the side effects have scared me from day one and the potential for him to get very sick or God forbid lose his life was just too much for me as his mom. As it continued to not work for him, the more and more comfortable I became about saying goodbye to it. There was always the promises though:
"It'll work, give it time."
"It is the medication of last resort for treatment resistant schizophrenia"
"My son is on it and has great success with it."
And it goes on and on. Those promises are what I clung to even in the face of it seemingly not working. So, here we are now putting this behind us (though it'll take time because it can't be stopped without a slow titration down).
I asked Dr. N. though what would go in it's place? I was honest about my feelings about the Latuda also. While it has brightened Thomas, I just don't think it's a powerhouse drug for schizophrenia--or at least not Thomas' schizophrenia. I have trusted my gut about what to do or think about Thomas' illness since his very first psychotic break and it has never led me astray so since my gut is telling me now (and actually did the same with the clozaril) that the Latuda isn't the one to lay ALL of our hopes on then I'm not going to put all of my eggs in one basket and trust the Latuda alone to do the job. His response to me about that was this:
"Sometimes people need 2 medications, but it's early to tell. One pitfall of using research data (such as the efficacy of clozapine for treatment resistant cases), is that we end up applying statistics to one individual. In other words, if we say a medication is 60% effective, it might not mean everyone will feel 60% better, but it means that 4 out of 10 people might not get better at all. As effective as the clozapine can be in a study population, we don't know at this point how effective it will be for Thomas. I think it is OK to be cautious about what we try, and to consider all options we have."
Quite frankly I love that he looks at things the way he does. He listens to me but he is an extremely intelligent man and cares about Thomas so he's not going to jump into something without first being thoughtful about the decisions he makes.
So, that is where we sit now as far as medications go. It appears we aren't going to increase the Latuda even though we are working to eliminate the clozaril. While this baffles me, it is not in my control so I will have to put my faith in the good doctor to make a good decision for Thomas' mental health. In the mean time, I brace myself for what's to come for Thomas. As of this morning I am ready, I am not letting fear be my guide and I am remembering that we have made it this far and will continue to make it, whatever is thrown our direction.
Wednesday, February 12, 2014
Dr. N. And The Clozaril Cessation
Written by Melanie Jimenez
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