Anonymous
Post 07/21/2018 14:32     Subject: Gettnig evaluated for PANDAS/PANS
FYI, Nightline just had a show on this last night and Dr. Latimer was interviewed.
Anonymous
Post 07/20/2018 23:13     Subject: Re:Gettnig evaluated for PANDAS/PANS
I wish that they had spent more time on the 20/20 show talking about the treatments and explaining why they do or do not work. I have a daughter with this awful illness and disappointed in how sensationalized the piece was. Not sure it will help our plight much.
Anonymous
Post 07/20/2018 22:55     Subject: Re:Gettnig evaluated for PANDAS/PANS
Anonymous wrote:20/20 on ABC is going to be about PANDAS.

10pm EST, but probably also on demand if you miss it.


Heavy featuring of Latimer.
Anonymous
Post 07/20/2018 22:54     Subject: Re:Gettnig evaluated for PANDAS/PANS
When we went the only thing she took was Medicaid--unusual as so many don't. Do not know if that is still the case.
Anonymous
Post 07/20/2018 22:31     Subject: Gettnig evaluated for PANDAS/PANS
Why doesn’t she take insurance? Her fees are prohibitively high.
Anonymous
Post 07/20/2018 21:35     Subject: Re:Gettnig evaluated for PANDAS/PANS
Dr Latimar is a lifesaver if your child has PANDAS or any other type of autoimmune encephalitis. I can't stand to think about what my child's life would be like if we hadn't landed in her care.
Anonymous
Post 07/20/2018 21:23     Subject: Re:Gettnig evaluated for PANDAS/PANS
20/20 on ABC is going to be about PANDAS.

10pm EST, but probably also on demand if you miss it.
Anonymous
Post 07/20/2018 12:18     Subject: Re:Gettnig evaluated for PANDAS/PANS
Anonymous wrote:
Anonymous wrote:There is one poster here who dismisses the entire notion of PANDAS. As I recall, her child was misdiagnosed with it.

However, apart from Hopkins, there is pretty widespread acceptance of PANDAS. Harvard, NYU, Yale, Duke, and Stanford, not to mention the NIH, all have specialized practices for this. It could well be the case that many children are misdiagnosed with it. However, if your child has PANDAS, it is devastating. Pediatricians and non-specialized doctors are pretty helpless in addressing it.

My child has PANDAS and I have every reason to believe that is the correct diagnosis. His is a very classic case and he was diagnosed at the NIH. Moreover, we have a strong family history of rheumatic fever, an illness that is very closely related. There is also a family history of other autoimmune disorders for which studies have shown have a high association with PANDAS.


Hi. Skeptic here. I don't doubt the existance of pandas and other infectious/auto-immune causes of neurological sydromes. I think PANDAS is a lightening rod for quackery and treatments that are not evidence based and have potential side effects.


PP here. That could well be true. From what I have read, including lots of forums, quackery appears to occur most often among naturopaths, not licensed MDs.
Anonymous
Post 07/20/2018 10:27     Subject: Gettnig evaluated for PANDAS/PANS
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:Is mycoplasma symptomatic?


There were symptoms but now that it's almost under control he just uses an inhaler during sports/extreme heat days. He had so many infections it was very hard to figure out which infection caused which symptom because a few overlap with each other - eg he had 2 infections affecting mainly the lungs. I hesitate to list them because they wouldn't be useful to you. Hopefully someone with a kid with just myco will reply. You can also look at the Pans discussion boards.


who diagnosed him with all those infections?


LabCorp test results.


who ordered the tests?
Anonymous
Post 07/20/2018 10:22     Subject: Re:Gettnig evaluated for PANDAS/PANS
Anonymous wrote:There is one poster here who dismisses the entire notion of PANDAS. As I recall, her child was misdiagnosed with it.

However, apart from Hopkins, there is pretty widespread acceptance of PANDAS. Harvard, NYU, Yale, Duke, and Stanford, not to mention the NIH, all have specialized practices for this. It could well be the case that many children are misdiagnosed with it. However, if your child has PANDAS, it is devastating. Pediatricians and non-specialized doctors are pretty helpless in addressing it.

My child has PANDAS and I have every reason to believe that is the correct diagnosis. His is a very classic case and he was diagnosed at the NIH. Moreover, we have a strong family history of rheumatic fever, an illness that is very closely related. There is also a family history of other autoimmune disorders for which studies have shown have a high association with PANDAS.


Hi. Skeptic here. I don't doubt the existance of pandas and other infectious/auto-immune causes of neurological sydromes. I think PANDAS is a lightening rod for quackery and treatments that are not evidence based and have potential side effects.
Anonymous
Post 07/20/2018 10:18     Subject: Re:Gettnig evaluated for PANDAS/PANS
Anonymous wrote:There is one poster here who dismisses the entire notion of PANDAS. As I recall, her child was misdiagnosed with it.

However, apart from Hopkins, there is pretty widespread acceptance of PANDAS. Harvard, NYU, Yale, Duke, and Stanford, not to mention the NIH, all have specialized practices for this. It could well be the case that many children are misdiagnosed with it. However, if your child has PANDAS, it is devastating. Pediatricians and non-specialized doctors are pretty helpless in addressing it.

My child has PANDAS and I have every reason to believe that is the correct diagnosis. His is a very classic case and he was diagnosed at the NIH. Moreover, we have a strong family history of rheumatic fever, an illness that is very closely related. There is also a family history of other autoimmune disorders for which studies have shown have a high association with PANDAS.


+1. I concur.

We also see Dr. T and drive from VA.
Anonymous
Post 07/20/2018 10:08     Subject: Gettnig evaluated for PANDAS/PANS
Anonymous wrote:Scam


Have you complained yet to your congressperson that NIH is misspending your tax dollars on a scam?
Anonymous
Post 07/20/2018 10:06     Subject: Gettnig evaluated for PANDAS/PANS
Scam
Anonymous
Post 07/20/2018 09:20     Subject: Gettnig evaluated for PANDAS/PANS
Anonymous wrote:
Anonymous wrote:Is mycoplasma symptomatic?


There were symptoms but now that it's almost under control he just uses an inhaler during sports/extreme heat days. He had so many infections it was very hard to figure out which infection caused which symptom because a few overlap with each other - eg he had 2 infections affecting mainly the lungs. I hesitate to list them because they wouldn't be useful to you. Hopefully someone with a kid with just myco will reply. You can also look at the Pans discussion boards.


I’m OP. I’m not sure who posted this, but it wasn’t me. Aside from low energy, no mycoplasma symptoms for DD.
Anonymous
Post 07/20/2018 08:41     Subject: Gettnig evaluated for PANDAS/PANS
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:Is mycoplasma symptomatic?


There were symptoms but now that it's almost under control he just uses an inhaler during sports/extreme heat days. He had so many infections it was very hard to figure out which infection caused which symptom because a few overlap with each other - eg he had 2 infections affecting mainly the lungs. I hesitate to list them because they wouldn't be useful to you. Hopefully someone with a kid with just myco will reply. You can also look at the Pans discussion boards.


who diagnosed him with all those infections?


LabCorp test results.