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Are any PANDAS Parents Health care Providers


cwmom

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Hi everyone,

 

I was wondering how many parents are health care providers?

I am a Pediatric Nurse Practitioner with Doctorate in Nursing Practice and interested in writing for professional journal- Have been thinking about it

for couple of years and feel the time is now- we really need to educate our PEERS!!!

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I am also, an np and we now treating a number of pandas kids in our practice. My MS is in adolescent health and public health. i do alot of writing and have so many ideas for writing/submitting to NP journals, would love to collaborate!!

 

We have a particular point of view as parent and provider that is so into detail and nuance with these kids, and so valuable to share. a blessing and a profound burden as well.

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I am a Critical Care RN, I have been trying to educate co-workers as well. Now that we also have a Lyme diagnosis there is another area that needs to be DRILLED into the medical community. I took my dd to the ER for a bite with a bullseye rash in 2005- why wasn't the possibility of lyme explored at that time???? maybe we could have been spared some of this misery. I am willing to contribute any way possible.

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I'm an ICU RN.My ds 8 was in hospital recently for an unrelated procedure (or who knows, could be related) and a third year resident was horrified when I told him he had been on antibiotics for 3 months! I tried to enlighten him, it's no different than the old treatment for rheumatic fever, don't they even teach that in medical school any more?? Anyhow, I wasn't in the mood to argue and told him to talk to my PANDAS Dr, who is a regular allergist/immunologist, to which he replied, well I suppose if it works!! PANDAS was new to me then but the more informed I get (thanks to this forum) and related websites, the more confident I'll get to push the cause to other healthcare providers. My kid's regular ped is a believer, having treated a couple of cases years ago, his developmental ped had heard of it but had no idea how to treat so I'm educating her as I go along, she even asked for the PANDAS Dr's name to refer other patients! With the power of the internet, parents are becoming more informed than ever and are demanding more investigating, which in time will lead to more diagnosis and recognition hopefully.

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I am a Critical Care RN and most recently a Critical Care Educator. I have provided all of the education to my pediatrician about PANDAS / PITAND. She believes but is reluctant to treat without some sort of treatment plan or guidance from a "specialist". Once she has someone to refer to, she is good with it. That works for now.

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Dedee... Dr. B is Medical Director for PANDAS Resource Network and wrote the medical section there: http://pandasresourcenetwork.com/ I gave that info to our Immunologist and he is looking over some of the research literature links... told me that is what he'd been trying to find.

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