Read more about the article We haven’t noticed any changes yet
Clozapine / Gavin / My thoughts

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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August 31, 2017
Read more about the article I’m hopeful this will produce a positive outcome
Clozapine Crisis / Gavin / My thoughts

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 million reasons, one of them being we want Gavin to have fun. There's no way to really predict how Gavin is going to be reacting to this change in medication. We may see an increase of Schizophrenic symptoms, including a return to more dark and concerning behavior. We may also not see a change at all, and that will basically tell us, at the very least, he doesn't need the higher dose. If there's no change, we will continue to…

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August 30, 2017
Read more about the article The decision has been made
Clozapine Crisis / Gavin / My thoughts

The decision has been made

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 after all of this, and I'm going to make this as quick and painless as possible. After discussing the possible options, we opted to go with Lizze's approach because it was the most conservative, and it was also a really good idea. ☺ Basically, we are reasonably sure that the Clozapine is at least one of the contributing factors to Gavin's blood related issues. If fact, it's likely to be the biggest overall factor but there are also other things…

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August 29, 2017
Read more about the article We may have a very, very difficult decision to make today
Clozapine / Gavin / My thoughts

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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August 29, 2017
Read more about the article Gavin just finished a very painful infusion
Bad Reaction / Gavin / Immunology / IVIG Infusion / My thoughts

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 as simple as needle placement. Maybe the needles were sitting funny or for some reason, the medication burned as it was going in.. Thankfully it's over with and the pain has subsided but I really hate when any of my kids are in pain. 🙁

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August 28, 2017
Read more about the article How do I protect my son when it’s his own body hurting him?
Gavin / Immunology / My thoughts

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 from 2.8 (8.08.2017). I'm so worried about him that I'm getting sick to my stomach. I've spoken with immunology to make sure they are aware but we are being referred to hematology and oncology. There's a particular doctor we are being referred to at Akron Children's Hospital who's supposed to be one of the best when it comes to blood disorders. I'm currently waiting for an appointment and the appointment is waiting for a referral. All that is being worked…

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August 28, 2017
Read more about the article I’m hoping for good news today
Gavin / Immunology / My thoughts

I’m hoping for good news today

After I get home from walking today, I'm going to devote the rest of my day to finding out the results of Gavin's lab work from last Friday. We need to know where is numbers are because they've been dropping very low but also because he's been getting sick for the last week. If his numbers are low, that could be why he's been getting sick and it's something to worry about. If his numbers are okay, then we have far less to worry about.

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August 28, 2017
Read more about the article I meant to share this eariler
Gavin / My Quotes

I meant to share this eariler

I meant to share this eariler but forgot. As you already know, Gavin went to bed last night not feel good at all. He was miserable and trying not to vomit. This has been happening on and off for a week or two. I've no idea what's going on. Thankfully, he's feeling much better today. In fact, it's like he was never feeling bad in the first place. Rather than drive myself crazy crazier by trying to figure this out, I'm going to embrace the fact that he's feeling better and roll with it.

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August 27, 2017