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West Coast PANDAS/PANS Symposium April 26 by SFO


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I just want to be sure that everyone knows about this upcoming event. It was really created by parents with parents' needs in mind. Its not just a lineup, however exciting, of presenters talking about however it is they treat PANDAS/PANS, although we love that information.

 

The afternoon is three concurrent sessions - one for parents, one for health care professionals, and one for educators.

 

The parents will have an opportunity to talk and process amongst ourselves and with Dr. Eric Fier from Atlanta, a loving and emotionally intelligent psychiatrist from Atlanta who works with alot of PANDAS families in breakdown and crisis - well, of course!! We are all PTSD ridden. Also, Dr. Margo Thienemann, an early proponent for PANDAS, will teach some specific skills around dealing with OCD flaring kids. She created and ran the pediatric OCD clinic at Stanford.

 

There will also be a Men's group with Eric Fier where they will probably sit around and drink beer and talk about the difficulties that men and marriages undergo in our stressed out families, trying to keep our families strong.

 

The health providers will meet with Dr. Susan Swedo and other treating MDs for a 2-hour workshop in recognizing, diagnosing and treating (or referring for) PANDAS. Yay.

 

and the educators will have a 2-hour workshop with Dr. Jamie Candelaria-Greene on recognizing PANDAS signs in the classroom and working with kids with PANDAS - wouldn't that have saved years of destruction in our house if only one person or teacher had on their radar - oh this kid was perfectly fine until he got sick and then he came back to school a different person - maybe i should suggest to his parents that they look into PANDAS.....what kind of world would THAT be???

 

We will have a great discussion on advocacy efforts around the country, moving PANDAS into more of a sustainable dialogue....

 

We will hear from some kids recovering from PANDAS/PANS...

Have a wonderful dinner together....

 

Please think about coming - and inviting your child's health care providers and teachers and school principals.

 

Here is the website: http://pandasparentsymposium.blogspot.com/

 

Please let me know if you have questions.

 

AND if you cannot make it and would like your child to be represented in the photo collage we are creating to use as a screen saver for the event, please email your child's photo to amyjoysmithnp@gmail.com

 

Hope to see you.

Edited by amyjoy
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We are adding a Newbie Parent Breakfast on Sunday morning, at 9am, in the hotel atrium.

Just to give new parents a chance to process and ask questions in their own freaked out and supported space.

So feel free to join us just for breakfast even, if you'd like, or send people.

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I can sense a ton of value here just reading the session description. DD has been flaring lately and we think its from a tooth infection. Problem is DD just had a mri and lumbar puncher which yealded only more bills. DD has pans symptoms but no diagnosis. Suggestions have been to check for low levels in her system, meantime her neuro was trying to read off a diagnosis of explosive rage disorder and then said "We" dont beleive in Pandas as if she was speaking for neurologists. I told her after she got finished reading back the description of. this disorder that it sounded like the people who came up with the definition couldnt find out what was going on and just called it that. She seemed surrprised by my response so I continued to explain my reasoning was because my job is about troubleshooting and its my nature to pick out weak premise that support a weak assumptions. Unfortunately I wasnt witty enought to challenge her statement that she doesnt beleive in pandas at the time. My thought after pondering our discussion that believing in something is about having faith and there is a disconnect there. I send her an email to followup our next steps but havent received a response yet. She is suppose to be asking some of her connections in childrens hospital seattle about direction. I got a few names of pandasnetwork.org for doctors in the seattle area.that we'd like to bring DD to but we are going to address her tooth first.

 

I'm a little diappointed that the session says men, not because i opposed to it, but because DD's mom has more PTSD.that DD's dad.

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4nikki, do you mean the Men's Group with Dr. Eric Fier? That is something we are actually excited about, let me tell you why.

So many families break up under this strain. Mine did, we are one of many PANDAS families whose marriage crumbled under the strain of the endless nightmare.

The entire afternoon is the all the parents meeting together, sharing what's working in their child's treatment and also, emotional support for our collective PTSD. We are all traumatized.

 

Most of the people you see on these forums are Moms. I think as a species we tend to reach out.

 

Eric thought it would be a great idea to give the men some additional time, to talk about their own struggles within their own selves, after the large parent dialogue. The purpose is to keep everyone engaged and supported around the unique challenges that men do face.

 

This in no way takes away from the larger group processing, its extra, and I hope, that while you may be an extraordinary exception, that you may see the value. The goal is keeping our families together, and strong.

 

DD's mom would receive incredible support if she comes to the event, i'm certain.

Edited by amyjoy
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Many of us will gather on Friday, whomever can, and we'll have dinner together.

there is also a happy hour type thing included in the room rate, so we'll try to meet up there.

a full breakfast is also included.

 

The event starts at 8am, which is early, but it ended up being the only way we could cram it all into a single day.

The morning is speakers, providers, kids, moms.

Lunch will be something like 1230-115 pm.

The breakout sessions are 115-330.

Then a break.

At 4pm, the Men's Group will meet, and the rest of us will discuss advocacy efforts.

445 or 5, Diana pohlman of pandasnetwork will talk about their advocacy and agenda, we'll have another PANDAS child share their journey, and then we'll adjourn.

Many of us are staying for dinner - I highly invite you to consider!!

 

I tried to post the the agenda for you but this program wouldn't let me.

but if you send your email, I will try to get you info you can open.

 

It would be incredible if you could make it.

A number of people are coming from so-cal.

Do you have parent connections where you are?

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Arghhh! Wish I lived in the US not the UK! You have so much more going on there! The few people that have heard of PANDAS over here don't know anything or don't believe in the theory. Most people think I am referring to the black and white cuddly variety (I wish). If there is any chance some feedback could be posted on this site for those of us who just can't be there, this would be fantastic. x

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Do you have connections where you are? I know of a mom in the UK that is actually come to the event, as well as 2 people from scotland and i believe a family from ireland :)

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No connections, no money and 26th April is actually my DD's 6th birthday and she is looking forward to having a party this year!! (I know a lot can change in 3 weeks but the signs are good thus far). The conference does sound fascinating and if there was any way.....

Edited by lydiasmum
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Arghhh! Wish I lived in the US not the UK! You have so much more going on there! The few people that have heard of PANDAS over here don't know anything or don't believe in the theory. Most people think I am referring to the black and white cuddly variety (I wish). If there is any chance some feedback could be posted on this site for those of us who just can't be there, this would be fantastic. x

I just dont understand the "Belief" statements and attitude. Pandas/Pans is not about having having faith. Its about using modern technology to find the cause of an illness. Why do doctors have to fight about a name.

Edited by 4nikki
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why do they have to fight about any of it!!??

 

i think its because their children do not have it, otherwise they would be singing a different tune.

 

there is a well known documentary filmmaker who set his sights and resources onto making a documentary that fully portrays the insanity of the mire that is pandas life and treatment and insurance and hardship and controversy. he will be at the event, looking for parents to dialogue about it. i hope you can come and introduce yourself to him. and if not, don't worry, there will be plenty of parents expressing their absolute frustration and beyond.

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