Comments for PANDAS Network

Comment on Could the Le Roy Students have PANDAS? Summary of Recent Events & Scientific American Article by jene hinks

jene hinks — Tue, 21 Feb 2012 23:18:46 +0000

OMG! THERE IS SO MUCH MORE TO THIS DISORDER. MY SON IS ON HIS SECOND IVIG TREATMENT,
IS THIS GOING TO WORK? WILL/CAN I EXPECT A NEW BEGINNING? I NEED MORE INFORMATION, WE, THE PARENTS WANT MORE INFORMATION. WHAT, IF ANY, ARE THE PROGNOSES IN PAST CHILDREN WITH PANDAS/PANS. WE NEED TO KNOW.

Comment on Dr. Trifiletti’s Statement in Regards to Le Roy Students by Diana Pohlman

Diana Pohlman — Sat, 18 Feb 2012 23:21:48 +0000

Two parents only posted on Facebook (not sure which facebook account) that the saw improvement within a few days of motrin (3x daily) and antibiotics. I don’t know what type or dose of antibiotics. If a child has pandas (from strep or another known bacteria like mycoplasma pneumonia) — they normally begin to mildly improve within 36 hours. The attitude improves, a happy demeanor starts to shine through– within 6 weeks more and more symptoms have fallen away. It is only within a few months if parents/doctors can determine if the antibiotics are sufficient. If the child isn’t completely returned to normal levels after a few months—other treatments might be considered like IVIG or PEX. But certainly within a week or two of beginning antibiotics it is clear there should be improvement if it is a pandas/pans syndrome.

Comment on Dr. Trifiletti’s Statement in Regards to Le Roy Students by R. Swede

R. Swede — Sat, 18 Feb 2012 14:52:15 +0000

Can you tell if the teens in Leroy are improving? If not, can you say how long it usually takes before seeing improvement after taking the anti-biotics?

Comment on Dr. Trifiletti’s Statement in Regards to Le Roy Students by jene hinks

jene hinks — Fri, 17 Feb 2012 19:25:11 +0000

Hi, when you state environmental factors, do you mean vaccines?
Is this an environmental possibility?

Comment on Save the Date! PANDAS Parents Symposium 04/28 by Carma

Carma — Tue, 14 Feb 2012 19:50:19 +0000

Not a moment too soon. This is a great thing. I will try to attend.

Comment on Save the Date! PANDAS Parents Symposium 04/28 by Tracie Patrick

Tracie Patrick — Sun, 05 Feb 2012 15:33:56 +0000

You have always been there for us
Thank you!!

Comment on Save the Date! PANDAS Parents Symposium 04/28 by Tracie Patrick

Tracie Patrick — Sun, 05 Feb 2012 15:33:12 +0000

I wish Doug and I could go!!!!
we would love to meet you and everyone
who will be there..
Tracie

Comment on Could the Le Roy Students have PANDAS? Summary of Recent Events & Scientific American Article by Md B

Md B — Sun, 05 Feb 2012 06:00:05 +0000

I’m 100% convinced it is Post Streptoccal Autoimmune NeuroBEHAVIOURAL (not sure who wrongly coined the word psychiatric to it over the years) It’s a movement disorder from the TOXINS of strep. So it can occer anytime, even a year later, after the infection; depending upon the strain of strep and if one’s immune system is compromised. My son was diagnosed 12 years ago. A few years ago he also got a little run down and missed sleep after a soccer game then suddenly-with negative throat swabs, went into kidney failure -with a blood titre then showing strep over 300 times too high

Comment on Case study: PANDAS and KLS by liz nylen

liz nylen — Fri, 03 Feb 2012 17:02:59 +0000

My daughter is now 32. At 8 yrs old she had Strep 2. Afterwards, she started pulling out her eyelashes and hair. It comes in bouts, sometimes a year will go by, then she’ll pull it all out again. She has recently been diagnosed with auto immune, rashes and hives… still torment her periodically.
She has suffered through, sleep disorders, anxiety……and personality change.
I believe she has PANDAS, from reading your website. I want to know, is there any “cure” available, for her as an adult? It would be wonderful to see her free, of this “monkey on her back”.

Comment on PANDAS in the Wall Street Journal by Elizabeth Moessner

Elizabeth Moessner — Sun, 22 Jan 2012 03:01:59 +0000

Our daughter is now 17 and still struggles with the after effects of the onset of PANDAS. we were lucky to discover what was happening within 4 months of the frightening onset. The last 7 years have been so difficult for every member of our family, and especially for our daughter. We noW know that our daughter had asymptomatic strep infections. It was apparent to the surgeon when he took her tonsils out last summer. When we went to this surgeon, he was well aware of PANDAS. Our luck in early diagnosis, however, hasn’t made life easy. Our daughter is still in therapy and will be for quite awhile. The therapy helps, triumphs are slow in coming, and fighting for understanding from skeptical medical and indifferent societal institutions is very difficult. It is exhausting, but don’t give up. The more we let others know,the harder we fight, the greater the possibilities for help. Our family truly understands the definition of courage when we watch our daughter as she recovers and rebuilds her life.