Let me start out by saying that this was a very good appointment and I expect nothing less from Akron Children's Hospital. They've never let us down. ☺
It's not too often that we go to an appointment for Gavin and walk out with what amounts to good news. Today was very clearly the exception to that rule.
I'll bottom line it for you and then talk about something that happened while we were there.
We met the doctor and he was very soft spoken. He took a lore than reasonable amount of time, answering my questions. He looked over Gavin's labs and said that *truthfully, his numbers look pretty good, even when we had thought they were pretty bad. *That caught me off guard at first because we've believed it to be a problem for a long time now.
[foogallery id="82476"]
To be clear, his ANC being on the lower end or fluctuating like it does sometimes, isn't a good thing. At the same time, it's not necessarily a major problem either and there are a few reasons why.
Without getting into actual numbers and confusing everyone, let me say it like this.
The doctor believes that the root cause of this is in fact, the Clozapine. While it's a problem, it's also not life threatening in its current form and that's a huge relief.
Clozapine is known to impact blood counts because it messes with bone marrow stem cells. That's why it can be so dangerous and why it's so tightly controlled. It's important to know that the dose of Clozapine itself doesn't matter. It's any Clozapine in the system, regardless of dose, is problematic.
That was interesting to learn. I knew it caused the problem but never knew the mechanics. I love new information because it helps me to better understand whatever I'm dealing with.
The reason he thinks that this has become a problem recently, even though Gavin's been on Clozapine for most of the last decade is pretty simple.
Basically, when people are younger, their ANC (Absolute Neutrophil Count) is usually higher than it is when they are adults. Because Gavin's levels were higher at a younger age, the Clozapine never really made a noticeable impact. Now that he's older and this overall counts are naturally lowering into the normal adult levels, the Clozapine is having a more noticeable impact. Does that make sense?
Think of it like this.
The Clozapine takes $500 out of Gavin's bank account each month. When Gavin was younger, he had $3,000 in his account so when the Clozapine deducted $500, he still had $2,500 left.
Now that Gavin is older, his bank account has $1,500 in it and the Clozapine still deducts the same $500 each month. The difference is that now he only has $1,000 left in his account.
Those are arbitrary numbers but hopefully you get the point.
Long story short, it looks like Gavin's numbers are okay as far the hematology is concerned. Where the problem lies is that REMS, the governing body that makes the rules about what the minimum requirements are in order to have Clozapine dispensed is very, very conservative. It's completely understandable but there does seem to be a disconnect somewhere.
I'm pretty sure Gavin's ANC has to be over 3.0 in order to get a refill released. This is a very serious medication and so they're not playing games.
Having said that, the doctor explained that Gavin could safely take Clozapine at a 1.5 or possibly even lower. The hospital standard he showed me says 1.5 is the minimum requirement for use of Clozapine.
There's a disconnect somewhere or perhaps REMS is simply extra cautious when dispensing Clozapine outside of a hospital environment. I don't know but my curiosity is going to have me call our pharmacy in the morning and double check the standard.
When all was said and done, the hematologist's information lined up almost exactly with what Gavin's prescribing psychiatrist says and that's certainly a comfort.
We left with the recommendation that if Clozapine is the only antipsychotic that works for Gavin, continue using it. He feels Gavin's numbers are fine and he's closely monitored anyway. We just have to be careful.
Frankly, he said he was more concerned about Gavin's platelet count dropping but since it's come back up, we're just going to keep an eye on things.
Once again, I'm so grateful for Akron Children's Hospital. The new doctor was amazing and the staff everywhere throughout the hospital is always incredibly kind. ☺
We got out of the appointment and home in time to pick the boys up from school. I called Lizze's Mom and canceled, thanking her for being willing to help out...☺
Finally, there is something else that happened and I eluded to it in the opening paragraphs of this post. I've decided that I want to try and make that a teaching moment. In order to do that, I really need to dedicate a separate post to it.
