Gavin Archives - Page 32 of 113

He’s almost missed 3 in a row and I’m worried

We are very quickly approaching the Gavin hasn't had an IVIG Infusion in over a week time frame and that's making me exceptionally nervous. Since his first infusion all those years ago, he has never gone this long without one. He's never missed three in a row and tomorrow will mark the third missed infusion in a row. I'm going to follow-up today and see if there is anything at all, that I can do to move things along. Realistically there isn't anything I can do but I feel better asking anyway. I'm worried.

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June 28, 2018

Gavin / My thoughts / Updates

2 very important, but slightly delayed updates

I meant to share this eariler but frankly, it still isn't finalized and nothing has actually changed yet. That said, I finally heard back from Gavin's immunologist about the issues with his GAMMAGARD. They hadn't reached out because they were still trying to get everything approved. The got everything approved but insurance screwed up and approved the wrong pharmacy. You can't get these things at just any pharmacy. The pharmacy has to agree to certain terms and there's a lot of red tape. Approving the wrong pharmacy doesn't do us any good because everything is at our pharmacy. I don't know if that makes sense. Basically, insurance made a mistake and the doctor has not be able to reach them to get it fixed. Calls aren't being returned, at least…

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June 27, 2018

Gavin / My thoughts

3 extremely important updates you missed

I've been slacking off in the writing department lately and I apologize for that. In order to get everyone caught up on the last couple of days, there are 2 important updates to share. I'll begin with yesterday's emergency appointment with psychiatry. Gavin has been extremely lethargic for the last couple of weeks. We were pretty sure it was tied to his Clozapine (the antipsychotic used to treat his Schizophrenia) but since nothing has changed in over a year, it also didn't make sense. We met with his psychiatrist yesterday afternoon. After they heard what was going on, they got us in right away. Unfortunately, they were also about 2 hours behind and that sucked but on the bright side, we ran into one of Gavin's old friends and his…

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June 20, 2018

Autism Parenting Woes / Gavin

When your child has no filter

One of the toughest lessons I've failed to teach Gavin is that you don't need to say out loud, everything that pops into your head. This has been an ongoing struggle for most of his life and no matter how many times I've talked to him about it, nothing ever changes. This isn't necessarily unique to Gavin. I've heard from countless Autism parents over the years, who face the same struggles. I'm not in Gavin's head and while I can somewhat predict what he's going to say, I can't say that I understand why he says it. At best, the thoughts he says outloud are mildly inappropriate and said in the privacy of our home. At worst, the thoughts he says are horribly inappropriate and said in a very public…

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June 20, 2018

Gavin / My thoughts

The single biggest reason I’m worried about our emergency psych appointment today

Lizze and I reached out to Gavin's psychiatrist's office because we're growing increasingly worried about his worsening level of lethargy. I mentioned eariler that they were our first stop because if this is medication related, it's probably the Clozapine. Since they manage the Clozapine, it makes sense to begin there. My email was returned within minutes and we got an appointment right away. I'm not sure if that's just convenient or both convenient and scary. It's impossible to get into Gavin's doctor and we literally received an appointment for the same day, scheduled for about an hour after I sent the email. I don't think there's anything medically significant to worry about there is still one reason to be very concerned. We could end up having to either cut back…

5 Comments

June 19, 2018

Common Variable Immunodeficiency / Gavin / Immunology / My thoughts / YouTube Video

What the hell is Common Variable Immunodeficiency?

With all the recent talk surrounding Gavin's immunological issues, I thought I would put something together that would help to educate those among us who may not know what CVID is or what it means to be diagnosed with it. Here's a quick 5-minute rundown or what Common Variable Immunodeficiency is and who it impacts Gavin. https://youtu.be/VvuuWe-8QR4

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June 18, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / My thoughts

The solution to Gavin’s immunology crisis was completely unexpected

We've been so stressed out since learning about the GAMMAGARD shortage. GAMMAGARD is the medication used to treat Common Variable Immunodeficiency, of which Gavin has. Basically, GAMMAGARD is donor antibodies from thousands of people and is used to replace Gavin's broken immune system. There is a nationwide shortage of GAMMAGARD and that presents huge problems for Gavin. Without treatment, Gavin doesn't have a functioning immune system and for those wondering, that's not a good thing. We had our emergency appointment with his immunologist this morning and everything went smoothly. Without going into great detail because I'm just not in the mood to do so, I'll sum things up. The manufacturer of GAMMAGARD says its on back order. From what we've heard, it sounds as though this is a manufactured shortage…

3 Comments

June 18, 2018

Common Variable Immunodeficiency / Gavin / Immunology / My thoughts

We have some difficult decisions about Gavin’s heath to make today

It was a rough night and a challenging morning. It's a big day and it's made worse by my lack of sleep. That being said, we've made it to our appointment with Gavin's immunologist. We actually made it about 20 minutes early as well. Traffic was much kinder to us than I had anticipated. Now we have some very, very difficult decisions to make about the future of Gavin's health.

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June 18, 2018