Gavin now needs weekly blood work

As we begin the new year, our Monday plans are already being adjusted because of the holiday. Gavin was supposed to get his labs drawn today but I'm not sure if they'll be open because of the holiday. If they aren't, we'll simply have to move things to Tuesday morning. It must happen Monday or Tuesday because he's out of Clozapine for Wednesday. As long as his labs are good by Wednesday, we'll have the script by the end of the day. This makes Gavin a bit nervous but it will all work out.

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We had a really close call

Yesterday afternoon, we realized that there was a problem with Gavin's Clozapine prescription. The problem was that we never received it. Last month, for whatever reason, the pharmacy didn't include the Clozapine in his predosed packets. Instead, they sent it out separately. Not a big deal.. Unfortunately, there was a change made to his prescription that we were never made aware of and that created a problem. For some reason, Gavin's prescription was reverted back to a seven day only. He'd been on a thirty day script for at least a year now. Not knowing this in advance created a problem because we needed to have his labs done every single Monday. This left us without a refill and working with the pharmacy to figure out what happened. I'm waiting…

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This is what’s going to happen at the @ClevelandClinic today

Here's the game plan for today. Shortly after taking the boys to school, we have to get Gavin to Dr. Reynolds for a follow-up and to discuss how he's doing since lowering the Clozapine dosage. The appointment is pretty early so we should be his first or second patient, meaning it won't take all day. 😀 On the way home, we will take Gavin for his weekly bloodwork before returning home to eat a quick lunch and then head to Cleveland for the rest of the day. Assuming we aren't back in time to get the boys from school, my Mom is going to pick them up and hang out with them until we get back. I'm pretty sure this is a 3 hour EEG so we likely won't get…

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Heartbreaking: We’re seeing changes in Gavin’s behavior

I wanted to give a general update on how Gavin's doing with the changes to his antipsychotic medication, Clozapine. It's been a couple weeks since the dosage was reduced and I think it's a fair time to evaluate how he's doing since those changes. One of the biggest changes I think we're seeing, was very subtle at first and hard to notice. It's been a couple of weeks now and it's become much more obvious that there are changes taking place. The biggest at this point is that Gavin's spending much more time in his room. What this tells us is that he's spending more time in fantasy, then he is in reality. By fantasy, I'm referring to the Schizophrenic hallucinations he interacts with. Gavin's spending much, much more time…

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We haven’t noticed any changes yet

Today was the first day that Gavin's Clozapine was reduced to 500 mg/day. Lizze and I haven't noticed any changes yet and that's to be expected. I believe Clozapine has a very short half-life, meaning it doesn't linger and needs constant maintenance doses. I would expect that if we are going to see any changes in behavior, we will see it over the next few days. If we don't see anything by the middle of next week, it's probably safe to say the reduced dose isn't negatively impacting his Schizophrenic symptoms. I've put my eggs in that basket because I'm not sure the Clozapine is doing anything anymore. Time will tell. Outside of that, the only issue Gavin was having today was pain in his legs. I'm not sure what that…

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We may have a very, very difficult decision to make today

In the morning, we have an emergency appointment with Dr. Reynolds, Gavin's psychiatrist. This is an emergency appointment to decide on the future of his Schizophrenia management. This is an enormous decision because it can potentially impact the rest of his life. If we take Gavin off the Clozapine, he will never be able to go back on it again. It's very important to understand that at this point in time, there isn't another antipsychotic that he can safely take. Taking him off the Clozapine could very well mean that we set Gavin up to be an unmedicated Schizophrenic for the rest of his life. While we're mauling that over, there's another side to this coin. If the Clozapine is what's causing the issues with the cell lines in his…

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I have bad news about Gavin

As I shared earlier, Gavin had an appointment today with Dr.Reynolds, his psychiatrist for over an decade.  The trip to this appointment was incredibly difficult for Gavin because his bladder issues were ramped up and causing him a great deal of distress. Thankfully he made it without incident..  His appointment went as well as it could, considering why we were there. We were there to both follow up on meds and discuss Gavin's current status. I'm going to try and make this short and sweet.  We talked about how Gavin's delusions and hallucinations are as strong as ever. There isn't a significant difference between his status while on 600mg of Clozapine and what it is now while on 800mg of Clozapine per day.  This is a scary thing for many…

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