Seeking PANS/PANDAS specialist
I'm starting to suspect PANS/PANDAS for my son. How do I rule that out? Do you know of a specialist that has helped with this issue and can take it seriously?
Thank you.
Sep 6, 2017
I'm starting to suspect PANS/PANDAS for my son. How do I rule that out? Do you know of a specialist that has helped with this issue and can take it seriously?
Thank you.
Parent Replies
Any GP or pediatrician can order the bloodwork. I don't know how to explain it but there is a lot of ambiguity around pandas, and a lot of extremely insistent people on the internet who swear it's very common. Our pediatrician clearly did not fall into that camp but did order the tests for my son when I asked for it. I am not aware of any specialist locally in pandas (or tic disorders). And no, my son didn't in fact have pandas - it's very uncommon.
There is a specialty clinic at Stanford.
There is a program at Stanford which may be helpful for you.
http://www.stanfordchildrens.org/en/service/pans-pandas
Good luck!
I have a child with PANS and it has been quite a journey. It is actually more common than one would think (1 in 200) and it is commonly misdiagnosed. I met 4 mothers in a 5 mile radius of me who have kids diagnosed with PANS or PANDAS. You very much DO need to have a specialist and those can be very hard to find. Most pediatricians have heard of it, but don't know the latest and correct testing, so things are missed, and you really need specific testing This is a very helpful place to start http://www.pandasnetwork.org/ Follow your gut, you know your kid. The Standford clinic is very hard to get into, but you can always try. You will likely need to pay out-of-pocket for a specialist. There are people who have to fly their kids to be seen by someone, due to the need and lack of specialists. Wishing you all the best and I pray it's not PANS/PANDAS for your son!
~ PANS Mama Warrior
I don't have a lot of advice because we're relatively new to this, but I can at least tell you how we managed to get a diagnosis and treatment. My 7-year-old son had sudden onset OCD this past spring after years dealing with cycles of tics and other issues. I stumbled across a PANDAS site and insisted his pediatrician test him for strep, even though he had no sore throat or fever. Turns out he was loaded with strep and was asymptomatic. Our pediatrician placed a referral for him to go to the Stanford clinic and he's been a patient there for several months. So, work with your pediatrician and really push her/him to do some preliminary tests and help you track down a specialist. As someone else mentioned, the Pandas Network is also a good resource and has a list of CA specialists: http://www.pandasnetwork.org/research-resources/us-providers/. Best of luck to you and your son.