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.
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 might be a good starting point. He is the top neurologist in the country treating tough cases like Gavin. He has a teenage boy named Stefano he’s treating right now who had very similar problems to Gavin- loss of function and many, many symptoms. He can do skype and phone consults, in person visits, and will work with your financial situation and consult with Dr. Reynolds so he can handle things at a local level if need be. You can find him by googling his name or on Facebook.