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3bmom

PANDAS/PANS Conference this Weekend

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I will not be there, but hope that someone will be able to take notes or make videos to share. I have found the videos from the NE Conference to be very helpful!

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I'm going. My DD is 11. Kawasaki's and PANDAS. Moved from San Fran to San Antonio (KD DX) to Seattle (pANS DX) just moved back to NorCal area again.

Let's meet up there?

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https://www.youtube.com/channel/UCfQ-mNMg5c0hIQMiR-ZQ_xA

 

There are 2 videos up so far at the above link - one from Dr. Nancy O'Hara's talk about Lyme and the other from the doctor's breakfast. I found the doctor's breakfast to be really helpful.

 

The link below is to the opening remarks and Dr. Swedo's presentation.

 

https://www.youtube.com/watch?v=kvTFiV0R1HM

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Just sealed the deal. Reservations made. Will someone be coordinate dinner Friday for those who will be there? I have seen that mentioned, but would love details so I can be included!

 

Kristi

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3bmom,

I am not attending however I am particularly interested in hearing any feedback you aquire from Dr. Jenifer Frankovitch (finally a rheumatologist!!) and the role of Rituximab or other immune supression (cytoxan, cellcept, cyclosporine, etc). I feel in severe patients this is a vital step in the role of relapse avoidance.

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3bmom,

I am not attending however I am particularly interested in hearing any feedback you aquire from Dr. Jenifer Frankovitch (finally a rheumatologist!!) and the role of Rituximab or other immune supression (cytoxan, cellcept, cyclosporine, etc). I feel in severe patients this is a vital step in the role of relapse avoidance.

This doctor was featured today on MSN homepage regarding a girl's misdiagnosed bipolar dx. Kudos Dr. Frankovitch! And yes, a rheumatologist!!

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If I remember correctly, (this can be challenging)there is a bar on the right as you pass from the lobby and then farther down on the right a restaurant. Should we plan on meeting for dinner Friday night at 6:00? I will wear a pink sweater so you can find me. ;D

 

I also agree about the Rheumatologist. I always say PANDAS is rheumatic fever of the brain. So much simpler to grasp.

Edited by 3bmom

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3bmom,

I am not attending however I am particularly interested in hearing any feedback you aquire from Dr. Jenifer Frankovitch (finally a rheumatologist!!) and the role of Rituximab or other immune supression (cytoxan, cellcept, cyclosporine, etc). I feel in severe patients this is a vital step in the role of relapse avoidance.

This doctor was featured today on MSN homepage regarding a girl's misdiagnosed bipolar dx. Kudos Dr. Frankovitch! And yes, a rheumatologist!!

We have been struggling to get a diagnosis and find some treatment for DD, but everything comes up megative. DD just had her first rage/panic attack in the mall while shopping. She had been self controlling both mom and DD overestated how long she could handle it. Luckily i was there. She was headed out the door passing the last set of clothes racks and displays then hit the floor. The in the mist of her screams the first thing she did was grab the dresses closest to her hand and start tearing. I had to hold her from doing more damage she just screamed. The security guard was surprisingly calm and asked if we wanted the paramedics, but i had it barely controlled all the while DD was screaming at the top of her lungs. She screamed she was afraid and hugged me very tight. afer about 5 to 10 munites, i had no awareness of how much time truely passes, and coaxing DD to get to the wheel chair so we could get to a safe place, the car, she allowed us to help her in the chair. Mom said the store owner was accomidating and told us not to worry about it. The guard told me later he was a special ed teacher. He said being a guard was his part time and could tell i knew exactly how to care for DD.

 

DD has a tooth infection that i'm hoping get fixed on wednesday.

 

Sorry for the off topic, but we just want to find a doctor preferraby north west washongton that wont waste our time chasing traditional diagnostics checking based on probability and do some real troubleshooting. Traditional care is costly and yealds nothing for DD's treatment specifically when we haven't found the cause. DD tests show she is normal but every doctor including her phciatric , have been able to do nothing except to say her condition is pathology.

 

I was planning to go but with DD's flare i didnt feel comfortable leaving her.

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