What it’s like to be on #COVID19 lockdown with 3 #Autistic kids, 1 being #immunocompromised


One of growing concerns is for Gavin. As you know, Gavin suffers from CVID or Common Variable Immunodeficiency. His immune system is compromised and he requires IVIG Infusions twice a week in order to not get sick. For whatever reason, his supplies never showed up this week and I can’t get through to the pharmacy to find out why. It’s a specialty pharmacy, so it’s challenging to get through anyway.

I have no idea what’s going on and of all the times that this could happen, you literally couldn’t pick a worse one. Gavin is immunocompromised and we’re living through a fucking pandemic. That puts him at very high risk. Now he doesn’t have his medication that provides him with a temporary immune system.

In the morning, I need to get answers as to why this is happening and when it’s going to be fixed. This is simply too important to let go.

To make things even more challenging, Lizze and I have been talking and we think it might be best to pull Gavin off the Clozapine. It’s an insanely tightly controlled antipsychotic for the treatment of Schizophrenia. It requires blood work before each refill and there is no way around that.

Considering all that’s going on around us, and Gavin being immunocompromised, I cannot justify taking him to the lab to have his blood taken, just to refill a non-lifesaving medication. I felt that way before knowing his infusion medication would be in limbo. Now I can’t see putting him in that much risk. Lizze and I decided that I would speak with his doctor and find out what we should do. We’re leaning towards removing the Clozapine but we’re waiting to see what his doctor recommends.

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Christine Rumsey

I teach high school students on the Spectrum, and I just discovered this blog. As I am sitting here trying to come up with lesson plans, I found this blog to be very informative and insightful. I’m thinking of keeping my lessons a lot simpler than I had originally planned. Thanks.

IM

Hello Rob,

Thank you for the update.
I noticed that you described Gavin as sweet and gentle. If I remember correctly, you previously described Gavin as having some behavioral problems.
Has something changed over the years?

I hope this is not too intrusive.

BJW

Humans are adaptable. I remember seeing scenes of people running through the streets of Sarajevo, because they needed to go places. And they were scared of the snipers but didn’t give up. This is going to be hard, and I’m sorry for you all.

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