Tag: childhood disintegrative disorder



I’m hopeful this will produce a positive outcome

Beginning today, Gavin will be on a reduced dose of Clozapine. We will be dropping from 600 mg/day, down to 500 mg/day until we return from Gavin’s wish being granted by Wishes Can Happen in October. We don’t want any medication changes to take place during the trip for a… Read more »



How we ended a very stressful day

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It’s been a really long day and I haven’t written much because I’m really tired. It’s been an emotional roller-coaster today with all things Gavin. Rather than focus on that, I wanted to share how our day ended instead. After getting the boys to finally go to bed, Lizze and… Read more »



The decision has been made

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We just got out of Gavin’s appointment, and my God it took forever. The two and a half hour wait sucked but I can’t really complain because they squeezed us in. This appointment was purposed to discuss Gavin’s medication, specifically the Clozapine and it’s impact on his health. I’m exhausted… Read more »



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… Read more »



Gavin just finished a very painful infusion

Poor Gavin had a really rough IVIG infusion this evening. Everything went as it normally does but for some reason it was really painful. Every once in awhile, Gavin’s infusion will be incredibly painful. I haven’t a clue as to why this is, but it could be related to something… Read more »



How do I protect my son when it’s his own body hurting him?

I received a call from the pharmacy this afternoon. He was calling to let me know the results of Gavin’s lab work from last Friday. The labs came back and it’s bad news. Gavin’s WBC is at 3.9, down from 4.8 (8.08.2017) and his Absolute Neutrophil is at 2.2, down… Read more »