YES! Thank you for this post! I agree that every child with PANDAS/PANS needs to have this testing done. I would add Lyme and Lyme co-infections, as they are a major PANS trigger. As an FYI- strep titers are only useful if you have a baseline number, and also keep in mind that about 30-40% of people do not produce a titer response to strep. Sorry you're a part of this club that nobody wants to be in. We know all about compulsions and Ivig in this house 😉

It sounds like you're doing the best that you can, and your son is blessed to have such a diligent parent! My son can't be in a classroom setting either- too many 'quirks', too many germs, and he just doesn't have the energy to get through the day. He's also immunodeficent, which is extremely common in PANDAS/PANS kids, and often overlooked. The fact that this diagnosis is controversial is mind boggling. The AAP recently accepted it as a diagnosis, and is now in the process of writing treatment guidelines. While it's a step in the right direction, we have a looooooong way to go before the stigma fades. It's frustrating. I will say I struggled with the idea of therapy as well, but cognitive behavioral therapy has been shown to be helpful in dealing with OCD and anxiety. Think of it as providing your child with a tool box of things to help them identify triggers, etc. It's tough, however, because the disorder is so unpredictable, that there's no guarantee that something that works this week will help next week. Hugs to you 😊

I'm so sorry your son has PANDAS. Hugs to you, it's a tough road. Do you have any providers in your area that specifically treat it? They tend to be far and few between, but it might be worth checking the PANDAS physician's network. If I can be of any help to you, please don't hesitate to contact me.

My son has never had a flu vaccine, but that's interesting.

Hello. I'm a fellow homeschooling mom of two boys. Two years ago my youngest son, Noah, was diagnosed with PANDAS/PANS. It has been very difficult for our family, as we have had to travel out-of-state for doctors and treatment, because despite having a vast medical community in our backyard, there is a gross lack of knowledge and acceptance of this diagnosis. As a result, we've been very fervent in our attempts to raise awareness. This coming Sunday, October 9th, is PANDAS/PANS Awareness Day, and I'm asking for your help in spreading the word. I've created a website, thepandasproject.com, as well as a Facebook page (The PANDAS Project). It has information about PANDAS/PANS, personal stories, and resources that can be shared. If you have any questions, feel free to message me, or email me at thepandasproject@gmail.com. Thank you 😊

Coming out of lurkdom again. I've been living this hellish nightmare for almost two years. We've been to some of the best specialists out there, yet we're from from recovery (discovered an underlying immunodeficiency). The hardest part of this journey, aside from watching my precious child deteriorate before my eyes, is that it's so controversial in the medical community, and a lot of the specialists out there aren't covered by insurance and/or require travel out of state. I wouldn't wish this on my worst enemy...

I would definitely get on Facebook for the pandas/pans group. There are so many knowledgable people in the group who are familiar with all of the doctors who treat this. My son has been to two of the best and I credit them with saving my son's life. The right doctor is a critical component. We have had a very difficult road, but that's not the case for everyone. If you have any questions, please feel free to PM me.

I have been reading these boards for a while, and when I saw your post my heart sank, and I immediately created an account. I have a child with PANDAS. It's very rarely as simple as treating a strep infection. If you are on Facebook, I strongly urge you to join the 'parents of kids with PANDAS/PITANDS/PANS group. It's a closed group, so there's some level of privacy. This has been an invaluable help to our family. PANDAS literally changed our world overnight and we have been in the fight of our life to try and get our son back. The majority of the medical community does not understand this disorder, and it's really important to be treated by someone who specializes in it. I am happy to help in any way that I can, so please feel free to ask questions.