Varying degrees of bad news

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Today’s been one of those days that just keeps on giving. In some cases that would be a welcomed event. However, in this case, I don’t want what today’s been throwing at us.

We received a call from Gavin’s immunologist this afternoon. 

These calls are never good.

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Typically, if she calls us out of the blue, it means that something is wrong.  Today was no exception.

The reason she was calling was to let us know about Gavin’s lab work from Monday. This past Monday was Gavin’s latest IVIG Infusion.  This infusion provides him with an immune system, since his own is defective.

Before every infusion, they do lab work to check his immunoglobulin levels.  This let’s us know if the dosage is right.  If they are too low, he needs his dosage increased.



Apparently, this time his levels were too low. 

This isn’t necessarily a huge deal but it does further complicate things.  The other issue is that not only is his IgG and IgM levels low but also his IgA. This isn’t entirely new news because we’ve known about the IgG and IgM.

What is new, at least as far as I know, is his IgA levels. 

What does this mean? To be honest, I’m not entirely sure. For starters, it means that we have to bump up his IVIG infusion dosage.  This will likely translate into a longer infusion as well. We’re already clocking in at 4 to 5 hours a pop right now.  🙁

What worries me is the why. Why is this happening? Is this a new symptom or a worsening of his already compromised immune system?

I also learned that this may very well be tired to the autonomic dysfunction. 

Dr. Wasserbauer explained that if Gavin’s metabolic rate is accelerated (think increased heart rate etc), he going to burn through the donor antibodies much too quickly.

We will be slowly bumping up his IVIG dosage, beginning with his May 8th infusion.  We’re going to bump is up by 5mg at a time because we want to avoid any stress on Gavin’s body. His new dosage will be 25mg and it will increase over time,  until we get to a point that Dr.  Wasserbauer is comfortable with his immunoglobulin levels…

In all reality, we’ve been dealt far worse blows in the past. This is earth shattering news but I’d be lying to you if I said this news didn’t infuse even more concern into our lives.

I really truly fear for Gavin’s future.

While I’m never above trying to remain positive, unfortunately, we must deal with reality. The reality is that Gavin is likely to only get worse as time goes on. We’re never going to receive an out of the blue phone call telling us that Gavin has stabilized and that we have nothing to worry about anymore.

In the last few years, we have only ever really received varying degrees of bad news.

I wish things would be different but sadly this


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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  

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rmagliozzi
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rmagliozzi

I have also heard of hypogammagobulinemia being autoimmune in nature, like the immune system destroying its own immunoglobulins. Not sure if that could be happening with Gavin? I am so sorry to hear of this new development. I am praying all the time for answers for Gavin’s health problems. So frustrating for all of you.

lostandtired
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rmagliozzi, Thanks. I just wish we could at least know something for certain. Instead of just things to be worried about, I would love to get an explanation and a prognosis. 🙁

rmagliozzi
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rmagliozzi

This may sound weird, but what about letting the infectious disease unit at the hospital you normally use take a look at Gavin? Most of his symptoms would match things like lyme, lyme related co infections, and other chronic or exotic illnesses.