P.A.N.D.A.S- and not the cuddly bear

     I have a strict rule, one that I have lived by for about 5 years. I never Google it. What do I mean? (since obviously I use google all the time like every other person on the planet) I never look up medical things on Google. Over the years we have had many scares with our son. We have had all sorts of weird symptoms pop up and all sorts of bizarre medical occurrences. We have seen it all. We have been to many doctors, we have seen specialists that practice speacialties I didn't even know existed, we have reduced our pediatrician, who is entirely a man of science, to making the diagnosis of "it's Yonatan"often instead of an actual medical condition, since there seems to be no clear answer, but like I said, through all of it, I stick by my rule.  I never Google it. Well, until recently...

     A few months ago we were having dinner with friends and talking about our son. The husband was asking us all sorts of questions about him and we were telling him all about our son and what some of the challenges we face are. The next day I got an email from this friend saying that he thought he may have lit upon what was going on. He had googled all of the "symptoms" we had described and come across an illness called PANDAS. After that first email they kept on coming. Email after email with case studies and medical information describing PANDAS. So like the good mother I am, I forwarded it all to my pediatrician and asked him what he thought. After reading up on the info that my friend sent we both felt that he did not fit the pattern of kids with PANDAS. I called my friend back and told him that I thank him so much for his help but this isn't what Yonatan has. He responded by telling me that he would not rest until we went for the simple blood test to see if it might be this. About 2 days later my doorbell rang at 7:30 am and it was the same friend dropping off a book that he had ordered for me on Amazon. The book was written by a mother who had a son with PANDAS. Like he said, he would not rest. So, I read the book and even though I did not think the symptoms described there were exactly like what we were dealing with I said to the pediatrician "we have poked and prodded this child for every little thing, why would I stop at one more blood test" and so we did it.

     PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. In essence it is what can occur when a strep infection goes untreated. The strep antibodies continue to grow in the blood and can cause all sorts of problems. One problem that they can cause is OCD (obsessive Compulsive Disorder). While our son does not wash his hands repeatedly or tap his nose and feet he does have a severe problem with obsessions. Anyone who lives near us has seen the little boy who delivers the mail all over our neighborhood because he is obsessed with the USPS. He is famous at our local post office and all the mailmen know him. A year or two ago, if you had us over, you probably remember quite well the obsession with bottles that he had, and who can forget the doors, he could open and close those for hours. (PANDAS is an extremely controversial medical diagnosis for various reasons and is also not well known.)

    About a week after we went for the blood test the results came in and sure enough my sons strep levels were way elevated.  I researched and googled and spoke to the mother who wrote the book to learn more. She told me that while a typical PANDA is a child who is normal all his life and then one day develops the symptoms of PANDAS she does know of stories of children who were never normal, who never spoke, or acted like normal kids and then once treated for PANDAS were healed. The crazy thing is that the potential cure for PANDAS is long term high doses of anti biotics. Something so simple!    
     And so we began our journey. After the initial two weeks of anti biotics we could not believe our eyes. The same child who had been recorded as speaking about the mail truck at least 35 times in a 30 minute period at school went an entire day without talking about it. While out walking we were able to get him to wave to the mail trucks we passed instead of delivering the mail to each and every house. We were floored and thought to ourselves: is this even possible, for 6 years we have lived with this and now look, it can be cured by anti biotics! After the first two weeks though things seemed to settle. While there were many significant changes in our sons behavior it was no longer miraculous. He has definitely changed for the better while on the anti biotics but he is by no means cured. At this point I can't even say for sure that he has PANDAS (since while the blood levels are an indicator they are not a clear diagnosis) but still we are continuing to explore this avenue. We are trying some of the different treatments and still hoping that they can help him. With PANDAS, it's kind of "treat it and see is it gets better" and so we are.
    So whats the take away here? I probably would still hesitate to google things because who really wants to have to sit and imagine half of the awful things you can find online but I will definitely continue to share my stories with friends because you truthfully never know who is going to have the insight that may make a big difference. You just never know where the missing link may come from or the the thing that was there but you missed because you were knee deep in t and couldn't see what was all around you. You know what they say "It takes a village to raise a child" in our case it may actually take a city :)

* for more information on PANDAS visit http://www.ocfoundation.org/uploadedFiles/MainContent/Find_Help/PANDAS%20Fact%20Sheet.pdf

or just google it!