Comments for PANDAS Network

Comment on Connecticut Passes Bill for PANDAS Research by Sinsunny Elko

Sinsunny Elko — Thu, 10 May 2012 13:43:53 +0000

Hopefully they will also consider the IVIG treatment to be effective and no longer experimental. My daughter is struggling to get this treatment! If it works, it should not be experimental. Let’s get these people the help that they need

Comment on NC 5K Fun&Run to Benefit PANDAS Awareness 05/05/2012 by Vickie Blavat

Vickie Blavat — Wed, 09 May 2012 18:50:08 +0000

I’m sorry you missed it, Holly. The parents have not listed their contact information on our support group page. However, they have posted on our facebook page. Perhaps you can connect with them on there.

PANDAS Network.org on facebook:
https://www.facebook.com/#!/pandasnetwork

Comment on NC 5K Fun&Run to Benefit PANDAS Awareness 05/05/2012 by Holly Everitt

Holly Everitt — Wed, 09 May 2012 18:46:41 +0000

I am so sad, I have 2 boys with PANDAS and a nephew with it. I JUST saw there was a race right here in my hometown to benifit PANDAS – I wish I would have seen it before.
Is there a support group around here?

Hopefully they will have this race again next year. I will be on the look out.

Comment on NC 5K Fun&Run to Benefit PANDAS Awareness 05/05/2012 by Aimee De Poortere

Aimee De Poortere — Sat, 05 May 2012 22:28:02 +0000

A HUGE thank you to Michelle Beard and the participants of the Cary, NC’s 5K/fun run for raising funds to support: pandasnetwork.org (a great resource for families of children with PANDAS)

GREAT event! Fun was had by all! Thanks again!

Comment on PANDAS Parents Symposium Press Release by Vickie Blavat

Vickie Blavat — Wed, 25 Apr 2012 18:16:53 +0000

Hello, Angela! You can sign up for communications from us on the left side of our homepage. If you are interested in attending the Symposium referenced in the post, I suggest visisting their website http://pandasparentsymposium.blogspot.com/. Registration is suppose to close Wed, April 25th.

Comment on PANDAS Parents Symposium Press Release by angela

angela — Thu, 19 Apr 2012 03:31:57 +0000

may I join the group?Im a mother of a 17/girl that has been diagnosed of PANDAS 2yrs ago.We are a filipino,and according to our doctor our case is very rare in the Philippines.

Comment on Dr. Swedo’s White Paper on PANDAS/PANS is Released! by Marcela C

Marcela C — Sun, 08 Apr 2012 16:16:27 +0000

After posting this letter here, we had the opportunity to phone Ms. Diana Pohlman and she inspired us to contact Dr. Trifiletti, our savior, he is a truly real human Doctor, he right away was interested in the well being of my son more than anything else.
From New Jersey to Miami he has been taking care of my son. He is under a second set of antibiotics and his OCD episodes had been faded dramatically, now his problem is sudden incontrolable rages and anxiety/depression , he states: “I don’t want to live this way, I rather die, I want to be the same than before…I don’t understand why this happened to me, and what is this stu*&@ PANDAS”
It has been almost a month since we contact Dr. Trifiletti and and it is a shame that living in a cosmopolitan city like Miami, full of movement there is NO EVEN ONE SPECIALIST IN PANDAS….
Thank you for having a symposium and educating all the people that should be involved in our children and their future well being. Sincerely,
Marcela C

Comment on The Nawara Family: PANDAS in the News by Vickie Blavat

Vickie Blavat — Tue, 03 Apr 2012 16:37:24 +0000

Sinsunny, I would contine to try to contact Dr. T. He is an excellent physician and good to have on your team. The doctors that specialize in PANDAS are swamped with patients. Granted, if you are an established patient, I would hope you get a response in a timely manner. As for other doctors that may be in your area, we recently added a slective Treating Physician List. It can be found here: http://pandasnetwork.org/resources-new-research/treating-physicians/. I believe some may be in your area.

Comment on PANDAS Article in Health Section of TODAY by Jene Hinks

Jene Hinks — Thu, 29 Mar 2012 01:59:06 +0000

Hi, I have just read an article in regards to PCB invasion in some NY schools, could this be a cause of pandas/pans?

Comment on The Nawara Family: PANDAS in the News by Sinsunny Elko

Sinsunny Elko — Fri, 23 Mar 2012 03:32:34 +0000

Dr. Trifiletti has diagnosed my 23 year old daughter with PANDAS. Unfortunately he is in New Jersey and we are in Pittsburgh. Dr. T prescribed a round of antibiotics, she has been improving on them, but now they have run out and her primary care physician here will not prescribe her any more. All of the doctors here that she has seen do not know what to do to treat her. Unfortunately, she has tried to contact doctor T. again to see if she can get further treatment and he has not responded to her as of yet. We are looking for a doctor in the Pittsburgh area who is willing to treat her. She is terrified that without further treatment whatever progress she has made will regress. Does anybody know of a doctor willing to treat an adult with PANDAS in this area. We are really at a loss because these doctors just shrug their shoulders and give you no answers or help.