Confessions of a depressed #Autism Dad: I’ve been better



This has been a really challenging week for me personally. I did quite a bit of driving and sat through my share of appointments, including Gavin’s IVIG infusion for May.

There’s a lot going on with Lizze right now and honestly, she’s not in a good place. 

For me right now though, I just can’t stop worrying about Gavin. I mean, I’m worried about Lizze as well but we know what we are dealing with and have a plan for addressing it. 

With Gavin there’s just nothing but the great unknown.



At the very least, we know for sure that he’s not doing well.  We know for sure that he’s continually getting worse. We also know that his immune system is becoming more compromised and his neurological dysfunction is impacting him more and more.

I never brought this up before but, I’ve been noticing that Gavin’s beginning to walk funny.

I don’t mean funny as in ha ha. I mean funny as in something’s wrong.



Gavin’s walking like he can’t bend his knees. I don’t know how else to describe it.  He’s never been a graceful gazelle but now he’s really stiff in his movements.

When it comes to Gavin and everything he’s going through, I don’t know how not to worry. I feel like we are battling against time and have been on the losing end of that for a very long time.

This is absolutely taking its toll on me. 

I’m not sleeping very well at night and when I do, I’m having nightmares, really, really messed up nightmares.

It’s no secret that I’m depressed and truthfully, I’ve seen better days. 

I’m finding myself more easily frustrated and lacking in energy. I’m tired, worn out…..no, more like burnt out.

Anyways, I just wanted to share…….


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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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julh
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julh

Rob, video him walking and moving around, you’ll be able to compare how his gait changes over the next few months
Hang in there

lostandtired
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julh

rmagliozzi
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rmagliozzi

This may sound weird, but what about early onset Parkinsons disease? It could be that he has really low dopamine levels causing the gait issues, speech issues, regression. There could be immune system involvement or because of the dysautonomia it is burning through his antibodies too fast like you suggested. Because my kids have PANDAS, which affects the basal ganglia of the brain just like Parkinsons does (only it increases dopamine and does not lower it.), I came across some info on it while trying to research and understand how the disease was affecting their brain.

lostandtired
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rmagliozzi That’s a really good question.. However, when Gavin first developed his movement disorder, the ruled that out.  As soon as we see our Neurologist I’m going to ask about PANDAS.. 
As always, thank you.  🙂

MeaghanGood
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MeaghanGood

rmagliozzi What is this pandas thing you speak of? I tried Googling and Wikipedianing it but of course only turned up results for the bear.

julh
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julh