mama2alex

So sorry about your experience! You should definitely go to a different lab next time. Sounds like that lab tech didn't know what she was doing - scary!! Hope it goes smoothly on the second try.

I just became a fan. There are currently 112 fans. What's the goal? Let's do this!

Our son had IVIG (2g/kg) 9 weeks ago and we are very happy so far. The healing is going slower than I'd like, but we are hopeful. We are working with Dr. Kovacevic by phone (Stanford gave us the one IVIG but is no longer helping us) and he said full healing takes about a year. He is adamant that IVIG be given at a high dose (at least 1.5mg) to bring the child into remission. If a child has an immune deficiency, then monthly lower dose IVIGs (after the first high dose round) make sense of course. IVIG is considered aggressive, but in mind it's the best option. Definitely check out www.pandasnetwork.org if you haven't already. Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach. Alex

Wasn't this in response to your email about doing a trial of Azithromycin, as suggested by Dr. T (the one in Palo Alto)? Zithro is short for Azithromycin, so I think it was just a typo on his part. Thats what I'm trying to find out. Dr. K sent me an email to try the Zitro option. Not sure what he meant. Andrea

I just took a look at the site and found that the task force is divided into Study Groups and Work Groups. Susan Swedo is chairing the Neurodevelopmental Disorders Work Group (see below). She is also chairing the Lifespan Developmental Approaches Study Group (see description below). Work Groups ADHD and Disruptive Behavior Disorders Anxiety, Obsessive-Compulsive Spectrum, Posttraumatic, and Dissociative Disorders Childhood and Adolescent Disorders Eating Disorders Mood Disorders Neurocognitive Disorders Neurodevelopmental Disorders Personality and Personality Disorders Psychotic Disorders Sexual and Gender Identity Disorders Sleep-Wake Disorders Somatic Symptoms Disorders Substance-Related Disorders Disorders of study for the Neurodevelopmental Disorders Work Group are: 299.80 Asperger's Disorder 299.00 Autistic Disorder 299.10 Childhood Disintegrative Disorder 307.9 Communication Disorder Not Otherwise Specified 315.4 Developmental Coordination Disorder 315.2 Disorder of Written Expression 315.31 Expressive Language Disorder Learning Disabilities 315.9 Learning Disorder Not Otherwise Specified 315.1 Mathematics Disorder Mental Retardation 319 Mental Retardation, Severity Unspecified 315.32 Mixed Receptive-Expressive Language Disorder 299.80 Pervasive Developmental Disorder Not Otherwise Specified 315.39 Phonological Disorder 315.00 Reading Disorder 299.80 Rett's Disorder 307.0 Stuttering The Lifespan Developmental Approaches Study Group is chaired by Susan K. Schultz, M.D. The study group is focused on helping work groups understand how age and development impact psychiatric diagnosis and symptoms of mental illnesses. This includes factors such as the age at which disorders first occur, how symptoms and diagnoses may change across the lifespan, and how disorders may evolve into new disorders over the lifespan. While the Child and Adolescent Disorders Work Group is focused primarily on examining issues in infancy, childhood, and adolescence, this study group is focused on the full lifespan including adult and geriatric populations. For all disorders, they seek to refine the content in DSM to better reflect lifespan issues and their effect on clinical expression. For a conceptual overview of developmental issues in DSM-5, please see the paper by Pine et al. (in: Evolution of the DSM-V Conceptual Framework: Development, Dimensions, Disability, Spectra, and Gender/Culture; in press). The members of the Lifespan Developmental Approaches Study Group are listed below.

Ha Ha! PANDAS doesn't exist, therefore we don't exist, therefore, no box.

Dr. Geller at Mass General is on the Scientific Advisory Board of the PANDAS Foundation. Here's a list of the board members from the article Dr. T sent out earlier: Dr. Daniel Geller, founder and director of the Pediatric and OCD Clinic at Massachusetts General Hospital; Dr. Tanya Murphy, known as one of the top PANDAS researchers in the nation and Director of the Rothman Center for Pediatric Neuropsychiatry at the University of South Florida; Dr. Kevin Price, general surgeon at Southern Maine Medical Center who came on board to ignite inclusion of PANDAS study in medical schools (he said it was a topic he did not study in school); Dr. Catherine Nicolaides, who initially diagnosed and treated Sammy. The doctor who wrote the fact sheet on the IOCDF website is in the Department of Psychiatry with Dr. Geller.

I read through it and the most glaring omission is IVIG and Plasmapheresis as potential treatments. They only mention antibiotics (along with SSRI's and CBT). Also I noticed at the bottom under "More Information" they only have the following: The PANDAS Foundation http://www.pandasfoundation.org Author: Evelyn Stewart, MD, Massachusetts General Hospital No other resources are listed.

Not sure when they posted this, but they now have a PANDAS Fact Sheet: http://www.ocfoundation.org/childOCD.aspx - click on "Dowload PANDAS Fact Sheet" Haven't read through it yet, but wanted to let everyone know, since some here had emailed them to request this. I'll be interested in everyone's opinions.

Good article. Thanks for posting Dr. T!

We pushed our doc to do 2g/kg, because we didn't want to risk going too low. Since this is the dose Swedo used, and we had a paper to show him, and I believe he'd done this dose for one or two other kids with PANDAS, he agreed. Thanks for doing the poll Melanie!

I marked improved, but not cured. However, we are only 9 weeks post IVIG and I've been told full healing takes around a year. At this point, he is 70% better overall, but I can still see small reactions to colds, viruses. All in all, we are SO glad we got him IVIG- all our lives have drastically improved compared to last summer and fall.

Just saw a link to register for Kurlan's webinar at the bottom of the article Dr. Trifiletti posted. It's today at 4:30pm PST/ 7:30pm EST. Here's the link: To participate in Dr. Kurlan’s webinar on February 24, click: https://www1.gotomeeting.com/register/774906745

You should definitely have her on probiotics while she's taking antibiotics, but these are more to keep yeast at bay. There are also medications to kill off the yeast once you already have an overgrowth. Nystatin is a very safe one, but there are stronger ones as well.

My son has always struggled with separation anxiety on and off, but it got REALLY bad with his sudden onset of PANDAS this summer. Soon after school started in the Fall, a friend offered to take him to school for me because drop-offs were so hard and we didn't want him to make a scene by crying and clinging to me in front of the other 3rd graders. So every day I take him to her house, he plays with her girls for a bit and then they all head to school together. It's worked like a charm. I think the key is it separates the stress of leaving me from the stress of going into school. The two together are too much.

I looked up streptococci on Wikipedia, and under beta-hemolytic streptococci they list Group A, B, C, D and G - no F. However, when I googled "Group F Streptococcus" a number of links came up. Did you find these? What did the doctor say about it?

A lot of parents here have found that someone in their family gets strep without any symptoms, so maybe this is the case for one of the children in your son's daycare. Are parents required to report it? The other possibility is they just aren't reporting it, and this could be resolved with a request from the daycare. My other thought is that a 15 day course is not enough. If he's getting strep repeatedly, he needs to be on longer-term antibiotics to wipe out his existing infection completely and then to prevent any more infections/exacerbations.

Vickie, thanks for posting this! And Buster, thanks for creating and sharing it! Somehow I missed this last month. I just created one for our son - it is SO much easier than trying to write it all down every day.

I'm so sorry this happened. That's just unbelievable! I agree - go straight to one of the experts (this doctor is not one of them) - Dr. Kovacevic, Dr. Trifiletti, or Dr. Latimer. Don't give up. You also might consider writing the doctor a letter telling her how unhappy you are with how you were treated and the results (or lack thereof). It's possible she's not even aware of how things unfolded for you. Just because the NP told you she consulted with the doctor, doesn't make it so. Also, I hope you told the person who recommended this doctor. You might also let Beth Maloney know - I believe this doctor is still on her list of PANDAS docs and I know they have a personal relationship, but maybe if she hears enough complaints, she'll take her off the list. That would save other parents the time, money and frustration in the future.

Dr. T, My son tested positive for 41 IgG and IgM on the Western Blot a few weeks after his sudden onset OCD this summer. He was negative for all other bands and our doctor considered this a negative for Lyme, but still suspects he may have Lyme. He was positive for Bartonella as well. Labs were done through IGeneX. Hope this helps. Please keep us posted on what you figure out!

I would definitely bring these things to his attention. You can fax these lab results to him prior to your appointment if you are doing a conference call. If he doesn't give it the attention you think is warranted, you might want to talk with an immunologist. I've heard Dr. Bouboulis is great and really knows PANDAS, but not sure where you live or whether he does phone consults.

I understand both sides of this argument, but the fact is the research isn't anywhere near all there yet. So I don't want Andrea to be discouraged from looking into PANDAS as a possibility simply because they never saw a sudden onset. The diagnosis needs to be made clinically with the help of a knowledgable doctor, not based on current research study criteria. I would definitely talk to Dr. T in Palo Alto, try a course of antibiotics, since your son has high titers, and see if it makes a difference in his tics and behavior. Perhaps try a course of prednisone. Maybe get the Cunningham test. That said, I think it's great that everyone is chiming in with their view. It's all valuable, even if we sometimes disagree. Jennifer

Hi Andrea, Glad to see you jumped right in to the forum! You will find a lot of support and information here. As I mentioned, our son had a sudden onset of OCD, but he has had problems all/most of his life with attention, sensory sensitivity, separation anxiety, transitions and behavior. But I believe there are at least a few other parents here who did not see the sudden, overnight onset of OCD/tics. It's possible that the initial onset of PANDAS happened at age 2 and he's been dealing with it every since. Can you remember if anyone in the family had strep around that time or in the months before you started seeing symptoms. Also, it's possible that you have a carrier in your family, so someone had strep at the time and you never knew it. This seems to be relatively common among PANDAS families. One thing I forgot to mention yesterday was that you may want to get an immunology workup on your son. Many here have found that their kids have immune deficiencies - it's worth looking into. Again, glad you are here - keep reading and asking questions! Jennifer

Happy birthday! Ironic you gave us all such a huge gift on your b-day. Thank you!!

I showed my 9 year old son the site today and he loved it! He said, "A kid made this website all by himself? That's amazing!" He liked seeing where everyone is from and of course, the games. He's never played Frogger and and one or two of the other games. Thanks again for doing this!