minimaxwell

Just saw this on Dr. Dan Geller's twitter feed. Would be nice to get answers from Dr. Jenike. The Forum is really ,really new. Perhaps they can add a PANDAS topic? Let's all make the change we need to see in the PANDAS world. Send him your comments and questions. We need a PANDAS Center at MASS General. Wouldn't it be great if we could have a place to diagnosed,treatment (including lVlG) and CBT/ERP for our kids. #OCD community, check out our new forum- you get to talk firsthand with our docs at #MGH: http://www.mghocd.org/resources/forum

Need your help! Please help me spread the word . Go on and post something,anything- ?'s and comments. -- great seeing/meeting all of you. It tookm me almost an hour and a half to get home. Not sure how many more I will be able to attend. keep up the good work! Just saw this on Dr. Dan Geller's twitter feed. Would be nice to get answers from Dr. Jenike. The Forum is really ,really new. Perhaps they can add a PANDAS topic? Let's all make the change we need to see in the PANDAS world. Send him your comments and questions. We need a PANDAS Center at MASS General. Wouldn't it be great if we could have a place to get diagnosed,treatment (including lVlG) and CBT/ERP for our kids. #OCD community, check out our new forum- you get to talk firsthand with our docs at #MGH: http://www.mghocd.org/resources/forum

Not sure if dr. gellers study is running yet. Try and get an appt with him at MGH, also try to see dr. Pasternack at MGH., I would also make an appt with immunology. what town are you in/ there is also Dr. Lacava in west Boylston who is seeing pandas patients.

Actually Dr. K told us of a patient in his 30's. This man left his wife and kids,drove home and wanted to sleep in his parents room! Also, Dr. jenike recently told me he had a few men in their early 20's he suspected had PANDAS. You could try getting Dr. L covered in network from your insurance. Ask your ped, they know how.

Glad you are putting the two together . Have you thought about getting extensive blood work done. I am so grateful we went to Dr. Trifiletti. after he explained our DD's results I was floored. Happy to report she is 7 weeks post lvlG and doing great!

Another PANDAS mom posted this in the PRN group. I totatly agree with her idea, for us to flood them with comments & info in hopes of getting them to include PANS in their publication! The APA's(American Psychiatric Assoc.) book is like the Bible for psychiatrists!! (I know because I have a few in our famil) This is what they turn to for help with diagnosis. There is NO info about PANS/PANDAS. Not even a mentions about the White paper or Nimh's updated info on the condition. Currently they are open to public comments for revisions.. All you need to do is become a memember(it's free) & then you can leave a comment. If we could get mentioned in this publication... it would definately change the way the mental health field views this condition!! "Dear PANDAS Parents, There is a new diagnostic category report being published by the American Psychiatric Association that does not include PANDAS/PANS. They are taking public comments now. I think we need to flood them with letters suggesting they mention it so that doctors can know that this is a possible diagnosis. Here is the website: http://www.dsm5.org/Pages/Default.aspx You will need to sign in to get an account (easy). Then when you are on the main page, go to ABOUT DSM-5, just under header, and drag down to comments option. My comment: Why is there NOT any mention of PANDAS/PANS??? This is likely an epidemic in this country, and many children are not being properly diagnosed. When an underlying infection could be treated to alleviate the suffering of children and young adults, many are being put onto behavioral drugs without the possibility of some underlying infection even being explored! This is medical negligence. Why no mention? Why no mention of the NIMH white paper by Susan Swedo and her studies?? Please help these children!!! Our son's life was saved by doctors who figured out that his sudden onset behavioral issues and learning difficulties could be helped with a tonsillectomy and antibiotics. He is back, 100%. Why not mention this possibility to your psychiatric community? We paid some "top specialists" THOUSANDS of dollars for them to tell us they had no idea how to diagnose what was going on with our son. Maybe if you had printed something that they had read, they would have had a better idea that PANDAS was a possibility. Check it out. Please open your minds so that you can help the minds of suffering young people. As a mother of a PANDAS child, I am trying to get the word out that no one was looking for the invisible, and completely ASYMPTOMATIC case of chronic strep that was going on, and that multiple physical examinations by our son's pediatrician, including throat inspections and swabs, had repeatedly come up negative. So the problem LOOKED psychological, but it was due to a physical condition that needed to be treated. When his tonsils were finally removed, inside there was found to be lots of strep that was completely hidden and unreachable by antibiotics. Please put the word out into your community that there is a way some of these children can be helped, and the way to start is to check the blood for excess strep or other infectious antibodies. The psychiatric community must be open to the possibility that infectious diseases can lead to mental health problems. Everyone accepts that Syphilis can do this, why not something else? This is Rheumatic Fever of the brain. Plain and simple." http://www.dsm5.org/Pages/Default.aspx www.dsm5.org Tiffani Weinberger Maxwell This is what I submitted. I hope you don't mind that I used some of yours,it was so well written.My daughter went undiagnosed PANS for 11 years by some of the top Dr.'s in the Boston area. We had diagnoses of OCD/Anxiety/Mood Disorder/Panic Disorder. Her triggers are Strep and MycoP. I am happy to report we have our daughter back after lVlG Treatment. Why is there NOT any mention of PANDAS/PANS??? This is likely an epidemic in this country, and many children are not being properly diagnosed. When an underlying infection could be treated to alleviate the suffering of children and young adults, many are being put onto behavioral drugs without the possibility of some underlying infection even being explored! This is medical negligence. Why no mention? Why no mention of the NIMH white paper by Susan Swedo and her studies?? Please help these children!!! Why not mention this possibility to your psychiatric community? Maybe if you had printed something that they had read, they would have had a better idea that PANDAS/PANS was a possibility. Please open your minds so that you can help the minds of suffering young people. My daughter's issues LOOKED psychological, but it was due to a physical condition that needed to be treated. Please put the word out into your community that there is a way some of these children can be helped, and the way to start is to check the blood for excess strep or other infectious antibodies. The psychiatric community must be open to the possibility that infectious diseases can lead to mental health problems. Everyone accepts that Syphilis can do this, why not something else? This is Rheumatic Fever of the brain. Plain and simple.r. Rosario Trifilletti and Dr. Kovasevic are doing great work and helping many kids,including my own.

I have spoken to several PANDAS Moms today whose kids have high Copper too. Trying to figure this out... Also my DD17 has high Platelets. We are 7 weeks post lVlG and she is doing great! She has also had pancreatitis 5 weeks ago,wondering if this just indicates inflammation.. Thanks, Tiffani

You should explore this dr's blog. he believes that the reason there is so much Strep now is because all these kids have their tonsils. years ago almost everyone had them removed. It is an interesting theory. http://beverlyhillsshrink.blogspot.com/2012/01/pandas-silent-pandemic.html I am so glad my DD had hers removed, only strep 1 time after removal. There is a PANDAS freindly ENT practice at MASS Eye and EAR. If your child had PANDAS they will schedule you right away for T&A surgery.

just wanted to add my 2cents.. My daughter had no response to abx,motrin or prednisone. We DID get a very favorable response from lVlG!!

Pleasure meeting all of you!!

http://www.pas-meeting.org/2012Boston/default.asp

Wednesday and the firside work for me. Unforuntately, we are having a really rough weekend. If things don't subside a little bit, I won't be able to make it. I'll keep my fingers crossed. Tiffany, I did not recieve a link about the conf. Would you mind sending it again? Thanks. I will email the others about Wed. night.

Wednesday and the firside work for me. Unforuntately, we are having a really rough weekend. If things don't subside a little bit, I won't be able to make it. I'll keep my fingers crossed. Tiffany, I did not recieve a link about the conf. Would you mind sending it again? Thanks. I will email the others about Wed. night.

I will be there,thanks for organizing.

We use Dr. Trifiletti in NJ and Dr. kovasevis in Chicago. i am also looking for an LLMD in MA who takes insurance (not sure if we have lyme yet but just in case) Also looking for an integrative Dr who takes insur. Update on my DD17, we are now 6 weeks post lVlG and she is doing great!!So much has lifted it is truly amazing. We are still dealing with some chronic fatigue and the OCD/Panic/Anxiety is still there but SO much better. the other day she said to me "Mom it has been days since I had a panic attack"

How about Wed. night for dinner? Middleborough is better than plymouth for me. HanHan ,that would be great if you could email them. This is the link for the conference, it is at the Hynes . My cell is 508-667-0574. Colleen ,lets meet at 10;10 am.

I would not bother with Boston Childrens ,they are not helping PANDAS kids at all. Not even the family that has donated lots of $$ in the past. we are all moving over to Mass general.

I am thinking about crashing the Boston Pediatric conference on Tuesday May 1. Dr.'s Cunningham,Leckman and Swedo are presenting. Think I can sneak in?

Would love to meet. We live in Southborough and I work in Natick.

Dr. Dan Geller @ Mass General. He is an expert on OCD and will be doing a PANDAS abx trial soon with Dr. Jenike.

Please do your self a favor and hire an advocate. After many years of having an IEP I thought I was doing well by my daughter. Advocate was the best money ever spent (except for Dr. T). I no longer get any pushback. The are scared of my advocate! Now head of SPED shows up at all my meetings. I have gotten so many more accomadations. At the time I was thinking we might want an out of district placement. We no longer need that.

So glad to read this. Dr. k put her on Folic acid after her lVlG which was a month ago. Hoping we see the same results. Thanks for posting this.

Thank you so much for posting. My DD used to have peeling feet! We were told athletes foot. We are new to all of this,PANS dx 1/24/2012. Now 4 weeks post lVlG and seeing some positive shifts. The gut is my next tackle. I am finding it frustrating that the integrative docs do not take my insurance. we have spent so much $$ already on getting diagnosed and treatment. We live in MA. I am sooo thankful for this forum and learning more and more each day. Huge Thank You!! I promise to pay it forward.