Update on the Meeting held at NIH

[mkur]

I cannot wait for Dr K to turn them on their heads. One of the first things I learned when my child got sick was to throw out my college psy books - nothing worked or helped.

[Mary M]

I cannot wait for Dr K to turn them on their heads. One of the first things I learned when my child got sick was to throw out my college psy books - nothing worked or helped.

 

 

Agreed, but getting anyone in the institution of medicine to "eat crow" is tricky business. Which explains, in part, why the name change seems so important to the institution. The docs who never believed need to save face by not having to now diagnose something they had denied for so long. And the mental health professionals are really going to struggle as they have denied any microbiological source to mental illness symptoms for so long. How many of their former and current patients have been misdiagnosed/ineffectively medicated? I know they were doing the best they could with the information they had at the time but it is time to see the new information for what it is and help children and families rather than wallow in their own self-righteous pride.

Mary

from Michigan

[Tenacity]

I cannot wait for Dr K to turn them on their heads. One of the first things I learned when my child got sick was to throw out my college psy books - nothing worked or helped.

 

 

Agreed, but getting anyone in the institution of medicine to "eat crow" is tricky business. Which explains, in part, why the name change seems so important to the institution. The docs who never believed need to save face by not having to now diagnose something they had denied for so long. And the mental health professionals are really going to struggle as they have denied any microbiological source to mental illness symptoms for so long. How many of their former and current patients have been misdiagnosed/ineffectively medicated? I know they were doing the best they could with the information they had at the time but it is time to see the new information for what it is and help children and families rather than wallow in their own self-righteous pride.

Mary

from Michigan

 

Hurray for Mary!!! That's hitting the nail on the head!!!

[saidie10]

Hey Linda thanks! Continue to keep us posted.

 

I can not wait to walk into my son's "old" pedi office and hand him this white paper and then hand him my walking papers!!! This is the man who promptly directed me to a neurologist over a year ago when I saw him while my son had just had strep and was presenting with tics and I asked him about PANDAS and the strep connection and he said "no, it's not that, that's really rare, etc". I want so badly to walk into his office now and say look at his bloodwork; look at his Cam Kinase; look, listen, care!!!! I probably could have treated my son with a strong and extended antibiotic at that time since it was so early, and we possibly would have never got to the point we are at now! If only he had listened...what a shame! Shame on him and on any other doctor who is sending kids who come in and present with sudden tics/OCD, etc to Neurologist to medicate them unnecessarily. Shame, shame, shame!!!! Do you sense my anger!!!

 

And while I am at it...I hope that this revelation or new publication, etc, does put everyone on notice; pharmaceutical companies, insurance, doctors, etc. Us PANDAS parents don't give up and they are about to have a lot more of them on their hands! I will relish in the day that a strep culture and/or necessary blood tests are routinely ordered for any child coming in and presenting with neurological conditions that they had not otherwise had.

 

Ok, I will get off my soapbox now!!

[kimballot]

Hey Linda thanks! Continue to keep us posted.

 

I can not wait to walk into my son's "old" pedi office and hand him this white paper and then hand him my walking papers!!! This is the man who promptly directed me to a neurologist over a year ago when I saw him while my son had just had strep and was presenting with tics and I asked him about PANDAS and the strep connection and he said "no, it's not that, that's really rare, etc". I want so badly to walk into his office now and say look at his bloodwork; look at his Cam Kinase; look, listen, care!!!! I probably could have treated my son with a strong and extended antibiotic at that time since it was so early, and we possibly would have never got to the point we are at now! If only he had listened...what a shame! Shame on him and on any other doctor who is sending kids who come in and present with sudden tics/OCD, etc to Neurologist to medicate them unnecessarily. Shame, shame, shame!!!! Do you sense my anger!!!

 

And while I am at it...I hope that this revelation or new publication, etc, does put everyone on notice; pharmaceutical companies, insurance, doctors, etc. Us PANDAS parents don't give up and they are about to have a lot more of them on their hands! I will relish in the day that a strep culture and/or necessary blood tests are routinely ordered for any child coming in and presenting with neurological conditions that they had not otherwise had.

 

Ok, I will get off my soapbox now!!

You go girl!