Welcome to my nightmarish fear

We got report cards for the 3rd quarter in the mail today.  Elliott got straight A’s once again and we are super duper proud of him. 

Gavin did awesome as well,  however he dropped a full letter in most of his classes.  He went from straight A’s to mostly B’s. This is a concern because I don’t know why this is.


We aren’t upset with Gavin at all but we are worried that this may be part of cognitive regression that he’s experiencing.  Slipping grades across the board are definitely a cause for concern and warrant a meeting with his teachers. 

To be honest, I’m really trying not to overreact because this is a huge fear of mine. 

I’m so worried that Gavin is slowly slipping away. We have been noticing things that lead us to believe he is continuing to regress. He’s having problems remembering things and he’s becoming more simple. I don’t know how else to describe what we’re seeing. 

Gavin is becoming more and more infantile.  Does that makes sense?

Welcome to the nightmarish fear I live with, every single day of my life. Thus is the burden I carry as a special needs parent.

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Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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I don’t blame you for being concerned. I worry about my oldest having cognitive regression like this, which happens with PANDAS. Have the doctors done anything to rule out if he is having some type of autoimmune encephalitis? (there are many types, not just PANDAS), and cognitive decline is often one of the symptoms. Even PANDAS does not “show up” on MRI tests, because it is dopamine receptors that are being hit in the basal ganglia, and rarely causes actual swelling of the brain. There are many other types, like GAD, NMDA (I hope I got that right), hashimotos encephalitis, etc. One of the PANDAS websites listed a bunch of them with a chart of symptoms, and I think which antibodies tests are run. Another thing you have your neurologist do is a lumbar puncture, which will also show signs of encephalopathy or infection and show levels of neurotransmitters in the spinal fluid. Our neurologist is doing that with her more severe PANDAS patients lately and some have really low levels of dopamine or seratonin, etc. (Thankfully she has not mentioned doing this on my kiddos yet!)


Here is the article. It is pretty medical, but I think the third or fourth page lists the different types of autoimmune encephalitis and symptoms. I don’t even understand the whole thing, but am sure it is right up the alley of a good neurologist.


rmagliozzi I need to talk to our neurologist….


lostandtired rmagliozzi If your neurologist is not familiar with this territory of things, you can see if he/she is open to consulting with a neurologist that deals with alot of autoimmune encephalitis and very challenging cases. Dr. Rosario Trifiletti, MD trained our PANDAS doctor on how to recognize and treat PANDAS and encephalopathies. He’s the top doc in the country in this area and does consults with other docs for these things all the time, via phone/skype, etc. Dr. Rosario has treated challenging cases like Gavin’s. He is in New jersey, I believe.


I don’t want to minimize your concerns, because I know regression is real, but bear in mind that it’s not at all unusual for kids (especially boys) to have their marks drop as they enter the teenaged years. Effort tends to decrease as interests change, and the work does get harder. Add to that Gavin’s unique situation and poorer marks aren’t all that surprising, really. Not saying you shouldn’t keep an eye on it, but honestly, my neurotypical son’s grades got steadily worse the older he got. And he’s perfectly bright, and a good kid, not on drugs. Just finds the work a lot harder now.


Jenn50 There is a lot of truth to what you say. It’s not just school though and he’s been steadily declining. I just want to make sure nothings wrong..


This is a real concern for a lot of autistic parents Rob.
In our case our son’s marks are still growing, however in his case there is a discrepancy between what the teacher and EA are saying and what is shown in the marks. 
In our case from what we can tell, our son has been moved from being marked in a modified way to being marked with the class. 
He is no less autistic and still requires the full time monitoring that he always has, however his comprehension and abilities are starting to show through (in large part due to great EA’s and teachers over the last couple of years) 
I can only hope that you can be so lucky as to find out that it is simply a differential in how they are marking your son.


CarlBainbridge After break, I’m going to find out. Thank you. 🙂