Gavin has been officially diagnosed with Childhood Disintegrative Disorder #CDD



It’s been a really long day and I haven’t felt like writing tonight because I’m trying to process everything.

I was going to do a Periscope broadcast and I probably will tomorrow at some point because sometimes it’s easier to simply speak.

I’m going to try to write this but my brain is sorta on overload at the moment,  so please understand that I’ll write something more coherent later.

Anyway,  I didn’t want to talk much about this until I had spoken to my family first.



I spoke to Lizze and most of my family.  I’ll try to talk to Lizze’s Mom again at some point to explain what’s going on as well.

I just didn’t want people reading about this before I could tell them myself.

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The image above shows his current and complete list of diagnoses.

299.10 is the diagnostic number for Childhood Disintegrative Disorder and they are now forever burned into my mind.

This diagnosis wasn’t altogether unexpected because it’s been suspected since he first began regressing when he was about 3 or 4 years old.

It’s one of those things that no one wants to diagnose because of what it means.

Every child is different and Gavin never really presents typically with anything but he regressed into Autism when he was 3 or 4 years old.  I always say it was like we put him to bed Gavin and he woke up someone else.

This has nothing to do with vaccines,  so please don’t even go there… ☺

CDD is a form of Autism in which a child develops normally until about the age of 3 or 4 and then experiences a profound loss of motor function, speech,  cognitive ability and social skills.

The literature states that by the age of 10, those dealing with CDD will regress to be very low functioning Autism and can even become nonverbal after developing language.

Gavin’s almost 16 years old and he’s never really stopped regressing.

He will plateau for awhile but then continue to regress eventually once again.  It’s just always been this way and it’s well documented by all of his specialists.

There really isn’t that much known about CDD because it’s so rare but Gavin seems to be breaking the mold a bit because he continues to regress into his mid-teens.

Behaviorally,  he’s still doing very, very well but he’s struggling in every aspect of his life,  from memory function, cognitive ability and problem-solving to coordination and speech.

No one knows how far he will regress.

Based on his history with regression,  he may never really stop regressing.

What that means for him or me,  I’m not sure at this point.  There is job treatment or cure for CDD and the prognosis is very poor.

All that can really be done is to keep him moving,  treat the symptoms and make him comfortable.

That’s about all I can muster for tonight.  I’ll try and answer any questions tomorrow, so please leave them in the comments below.

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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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Gwen Jorgensen
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Gwen Jorgensen

Can’t help but pray some more help will be found for him. Courage, comfort, and strength to you & yours. Hope you can rest.

Guest
Guest
Guest

I want to say I’m sorry. I’m hoping that getting an accurate diagnosis will help.

Guest
Guest
Guest

I want to say I’m sorry. I’m hoping that getting an accurate diagnosis will help.

Guest
Guest
Guest

I’m so sorry.  You must be broken-hearted.  What a difficult, difficult thing to face.  He’s lucky to have you on his side.

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Guest

Thanks dot. It’s one of those things where nothing really changes but at the same time, everything is different.
Does that make sense?

Guest
Guest
Guest

I’m so sorry.  You must be broken-hearted.  What a difficult, difficult thing to face.  He’s lucky to have you on his side.

Guest
Guest
Guest

Thanks dot. It’s one of those things where nothing really changes but at the same time, everything is different.
Does that make sense?

Leanne Strong
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Leanne Strong

Now, I have never met you or any of your family members (as far as I know). But Gavin is still Gavin, it’s just that many things are harder for him now than they used to be. I have an idea what you might be thinking. “You wouldn’t be saying that if you had to care for a child who has what he has.” I have Asperger Syndrome (milder end of Autism Spectrum, has also been removed from the DSM), and I feel like saying “we put him to bed Gavin and he woke up someone else,” is like if… Read more »