We have a very, very important appointment with hematology at @AkronChildrens Hospital today - Page 2 of 2 -

We have a very, very important appointment with hematology at @AkronChildrens Hospital today

Lately, his numbers have been pretty good and he’s been getting his Clozapine refills on time, which is absolutely crucial..

So we’re all on the same page. Clozapine is used to treat Schizophrenia and is one of the most tightly controlled meds in the United States. Blood work is required before each refill. Gavin needed bloodwork every week for six months and then every two weeks.

Labs have to be within normal range. They are faxed to the pharmacy and the pharmacy faxes them to the governing body who oversee the dispensing of this particular medication. If everything is good, Gavin gets his refill which is currently two weeks worth of pills.

We noticed the issues with his Absolute Neutrophil count when his labs were coming back and they refused to release his refills. His numbers we too low and when it turned out not to be a fluke or mistake at the lab, it’s been on our radar ever since.

Everything will be fine and then his numbers crash. They recover to some degree and then they crash again… There’s no discernible pattern.

His doctors have been closely monitoring things with weekly labs but no one has been able to determine a cause.

If it is indeed the Clozapine, we have to seriously consider removing the medication. That’s a huge, huge deal because it’s the only antipsychic medication left that Gavin can use. Unmedicated Schizophrenia is not typically a good thing.

Anyway, it took forever to get in and while we aren’t seeing the specific doctor we were referred to, we were able to get in to see a doctor in hematology.

That’s why this is such a big deal.

We don’t know what’s behind these dangerous issues occurring within his blood and we need to learn more.

The hope is to identify what’s wrong and deal with it. We’d like to get to a point where Gavin’s doesn’t need bloodwork so often. He does amazing with it now but we hate putting him through that.

Please keep Gavin in your thoughts today… ☺

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