PANDAS: A Scary and Controversial Disorder

I've suffered from OCD since I was about 6 yrs old (since the late 1970s). And as a kid I suffered from recurrent cases of severe Strep throat. Mom took me to specialists. White bumps on tonsils etc. I'm the only one in my family with OCD. And the only one who had what was essentially permanent strep throat! I'd heard that there was a link between the two, but now there is more concrete evidence of the connection. I love that this article even explains WHY.

Bravo for helping to raise awareness of this issue! My daughter was diagnosed with OCD last year. Although hers was not caused by PANDAS, I am thrilled with anything that will help other families get their kids properly diagnosed and into treatment more quickly.

There is a great local T.V. show called Kids First which just did a two part episode on P.A.N.D.A.S. The show is hosted by Rosalie Greenberg, M.D. who is the author of the book, "Bipolar Kids-Finding Calm in the Mood Storm" It is a wonderful resource for parents who believe their child is suffering from this. www.kidsfirstrgmd.com and go to the show page to view online!

About 3 weeks ago my 4yr old got Strep throat, and overnight he developed major mood swings,tics, sleeping problems etc.. You name it, he's got it. I went to see his doctor and she just brushed us off saying that it's "hard to prove, but she did give us a referal to a Neurologist. I'm making an appointment tomorrow. Some days are better than others, but the mood swings..I just don't know what to do.

Not all antibiotics work for PANDAS. We tried several, some making it worse. Augmentin has Clavulanic Acid in it which researchers have found will get rid of OCD in animals. It also has anti-inflammatory effects and can cross the blood brain barrier. Check for carriers of strep in your family and pets. Our cat was the carrier. Strep can be found in the throat, eyes, ears, nose, skin, rectally and vaginally. Check ASO and Anti-DNASE for evidence of strep, not just throat cultures.

IVIg was a miracle treatment for our son who was normal for a week after IVIg. Unfortunately he wasn't put on prophylactic Augmentin. It took two more strep infections in which his symptoms came back with a vengeance and reading "Saving Sammy: curing the boy who caught OCD" for us to figure out that part. We needed to keep strep from coming back. Every time a PANDAS child gets strep their symptoms become worse exponentially and it takes longer to heal from it.

http://www.scientificamerican.com/article.cfm?id=could-infection-cause-tourettes-like-symptoms-teenage-girls "PANS is a new name for an old idea: that infections by bacteria, viruses or parasites can cause the sudden onset of neuropsychiatric ailments such as Tourette's and obsessive-compulsive disorder (OCD)"

To MagEditor_Kara-It would have been easy to explain that there are many infectious triggers that cause PANS (not PANDAS) and included ALL the suffering children who manifest from other triggers. I guarantee that each "expert" you interviewed, explained that to you. Here's an example of some other great articles that do a great job fully explaining the disorder http://wholeness.com/media/PANDAS:_An_Immune-_Mediated_Mental_Illness.pdf

To PANSparent, though the story does focus on strep, it does mention mycoplasma as another possible trigger: One reason parents and doctors don't connect strep or other potential infection triggers like mycoplasma (which causes walking pneumonia) to a sudden change in a child's behavior is because there's often a lag, from one to six weeks.

Thank you for this article! Our daughter went on SSRIs and CBT after a sudden onset of OCD/tics after a persistent sinus infection. SSRIs did nothing to help. After a year, I made an appt with an OCD specialist at Mass General who diagnosed her with PANDAS. Antibiotics saved her life! I know there are critics our there. But when you have a child who suffered with ocd/tics for a year and the disappear on antibiotics, you know it was caused by infection.

If you are going to share a medical story in a magazine that sits in the waiting room of nearly every pediatrician's office, across the country, at the very least, give these parents good resources for accurate information by letting them know they can contact reputable 501(c)3 organizations like the PANDAS Resource Network www.pandasresourcenetwork.org and International OCD foundation www.ocfoundation.org

Many children will continue to suffer and will be mis-diagnosed/un-diagnosed as this article claims that only group A strep can cause an exacerbation in neuro-psychiatric symptoms in children. By not mentioning other infectious triggers, such as mycolasma (walking pneunomia), EBV (mono), Lyme disease, that possibly may be the cause/contribute to a manifestation of PANS.

This article has some valuable information b-u-t what is the tragic part(and missing piece from your story)is that there are MANY infectious triggers that cause PANDAS hence the reason the NIH uses the term PANS (Pediatric Acute Neuropsychiatric Syndrome)now as a more correct acronym and name for this devastating disorder.

Thank you raising awareness of PANDAS. Our daughter's PANDAS symptoms came on literally overnight 3 years ago when she was 8 years old and in the 2nd grade. After treatment with an antibiotic for several months and now a prophylactic dose, she is doing well. I lead a local support group and am contacted each month by new families. This illness is devastating to the family and child affected. Raising awareness so that PANDAS may be quickly diagnosed and treated is key!

This is truly an amazing discovery! My oldest daughter had strep almost nonstop since she was 5 years old with OCD episodes just like the ones explained above. We had her tonsils taken out when she was 12 and she is a new kid. She has even gained some weight from eating more, sleeps better, hardly complains. I'm convinced this was her problems as well. This article is confirmation for me to what I suspected all along. Awareness is key! Good job finding the solution to this problem!