Bad news

I've been continuing to follow up in regards to Gavin's NeuroPsych testing scheduled for tomorrow. After a few attempts to connect with our case manager, I haven't heard anything back. As a result, I called the Cleveland Clinic directly, checked on the status and I'm glad I did. Insurance has denied Gavin's claim three times this week already, the last being yesterday. Unbeknownst to me, the appointment had been canceled. I'm glad I did my due diligence because otherwise I would have hauled Lizze and Gavin to the Cleveland Clinic at a Godawful hour, only to find that we no longer had an appointment. The only reason I would have assumed anything in the morning is because I was told by the Cleveland Clinic eariler in the week that the…

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Taking on insurance and fighting for my son

We're still waiting to hear about Gavin's testing for tomorrow. We're stuck in insurance limbo. As soon as I found out there was a problem, I knew there was only a few things I could do. The first thing was contact Gavin's insurance case manager. If your child doesn't have a case manager, ask for one. The case manager is a single point of contact for everything related to insurance. Rather than call and talk to a random, script ready customer service rep, you have a direct line to someone who's sole purpose is to help insure your child gets what they need. I spoke with Gavin's manager in the middle of the week and explained what was going on. She immediately got involved and took over the battle. She's…

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Insurance won’t pay for Gavin’s testing

We have another issue that I haven't spoke about yet but as the day is drawing closer, I should bring you up to speed. When Gavin saw his pediatric neurologist st the Cleveland Clinic last month, it was decided that he needed three additional appointments. The first appointment was with the Cole Eye Institute because the doctor suspects that the lens in each eye has become detached. It apparently requires a special exam and wouldn't otherwise be detected. This would explain the visual problems he's been experiencing. The second appointment was an EEG. Gavin hasn't had a witnessed seizure in a long time but he is epileptic. The doctor wants to make sure everything is okay. The third and arguably most important appointment is supposed to take place in two…

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As a result, we worry all the time

I was able to get a hold of Gavin's psychiatrist's office this afternoon and got the lab results from his blood draw on Monday morning. I actually only got his Absolute Neutrophil count but that's a good chunk of information. His Absolute Neutrophil count has climbed up a couple points from 2.0 to 2.4. This is positive but we don't know why the numbers are climbing back up. Something is wrong and not knowing what it is, makes this even more difficult. We don't know what makes it better or what makes it worse. We don't know what precautions to take or when we should worry. As a result, we worry all the time.

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I’m so worried about Gavin’s labs today

I managed to get everything done this morning that needed done. Gavin's labs have been drawn and now all we can do is wait for the results to come in. To say that I'm on edge is an understament because I'm freaking out at this point. I don't know whether things have improved or gotten worse but I'll likely find out in the next few hours. If things have gotten worse for Gavin, we will likely pull the plug on the Clozapine and hopefully see a positive change in his labs.

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Clozapine Crisis: Here’s what happened today

We have a plan of attack for how to deal with Gavin's current mental and physical health problems, at least temporarily. The reason I say temporarily is because the particular plan of attack is only until we can finally get into Hematology at Akron Children's Hospital. Let me start with how the appointment with Dr. Reynolds went. It's clear that Gavin's having serious problems and it's at least partially related to the Clozapine. Let me be more specific. The issues with Gavin's blood are at the very leastade worse by the Clozapine, if not completely caused by the Clozapine. At the same time, the overall cognitive and neuro-muscular decline are most likely a result of Childhood Disintegrative Disorder. In other words, it's not related to the Clozapine. I mentioned we…

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The moment of truth and I feel sick to my stomach

Lizze is home sick with Elliott, who's still sick. Gavin and I are in the waiting room at Dr. Reynolds office. I'm so nervous about this appointment because I know what we're looking at and neither option is good. Gavin's chillin on the couch playing his tablet as he's waiting and I'm trying not to puke all over the floor. My anxiety is so high over this that I'm sick to my stomach. I want so badly for this to be over with and resolved. Gavin deserves to be safe, happy and healthy.

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Please keep us in your thoughts and prayers

The doctors office called this morning with Gavin's lab results and they were correct the first time. All his numbers are down and it's not looking good. Please keep Gavin in your thoughts and prayers. Maybe keep Lizze and I in there as well because we have some very difficult decisions to make this afternoon. Trying to stay positive.

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