Operation Hope: Very Difficult Decisions

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Lizze and I met with Dr. Reynolds this afternoon to discuss Gavin’s situation and do a meds check.

Dr. Reynolds is still very much concerned that we are dealing with Childhood disintegrative disorder on top of everything else.

That would explain the neurological issues and the regression.  The problem is that I haven’t the foggiest idea where the hell we would go for that and neither does Dr.  Reynolds. 

CDD is so rare that almost no one specializes in this field, at least from my understanding.  I’ve looked and haven’t been able to find anyone.  The other side of the coin is, does it really even matter anymore? The likelihood that anything could be done is minimal, does putting a name to it really make a difference?



I apologize but I need to take care of something I’ll get the rest of this posted later tonight. 

Consider this a Part 1.

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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

Rob, I believe there are causes behind CDD. Apparently there are many, many different types of encephalopathies, including autoimmune disease where the body attacks NMDA receptors. Go on yahoo.com and read the recent story about the girl who’s brain was on fire (that’s pretty much the title). She had seizures, hallucinations, loss of functioning, mood swings, psychosis, etc. They did a few tests and found out that’s what it was. It is hard to find a neurologist who knows how to look for and treat these things. You need to find the  best of the best, unfortu]natly. Dr. Rosario Trifiletti… Read more »