Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS/PANS)

Parent Q&A

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  • Support for Pans/Pandas

    (2 replies)

    In a recent reply to a question about therapeutic schools a member here mentioned a pans/pandas diagnosis. I am currently trying to help a local family navigate this syndrome with their teen. They are having trouble finding local doctors with experience treating pans/pandas and are struggling to get the medical support they need. Please let me know if anyone has information about supportive medical programs or providers  in the area. Thanks so much!

    [Moderator Note] See past advice on BPN about Pans/Pandas here: https://www.berkeleyparentsnetwork.org/recommend/pandas

    Hello!

    I had responded about PANS/PANDAS. My son has PANS. It is helpful to find a Lyme Literate MD (LLMD) as they typically have the best background to aid in diagnosis and treatment. Many Integrative MDs can help as well. Amy Smith, NP in Mountain View is local. Hope this is helpful!

    Jennifer

    Sorry, one more thing: there is a Facebook support group that I’ve found very helpful: https://m.facebook.com/groups/189241844607935

  • Stanford PANS Clinic

    (1 reply)

    Hi, My 5-year old daughter has PANS/PANDAS, and she's just been accepted into the Stanford PANS Clinic, and we're just looking for any feedback from other families who've gone there--the good, the not-so-good, things to watch out for, etc.  We're nervous about what they might recommend in terms of medical interventions, and we'd love to hear from other families experiences.  Thanks for considering.

    Hi there, I'd be happy to talk to you about our experiences there. We've been taking our son there since this past May. Feel free to contact me directly. 

    Kristin

  • Seeking PANS/PANDAS specialist

    (5 replies)

    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.

    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. 

Parent Reviews

My son had a similar situation. Research PANDAS/PANS. This is when an infection (virus, strep, Lyme, mold, or other issue) cause major behavioral regression. You may need to find a doctor knowledgeable about PANS/PANDAS to help you. My son is doing much better since getting a diagnosis! 

I can feel your pain. I would definitely recommend finding an eating disorder specialist immediately and also visit her physician if you haven't already. I was in a very similar situation with my daughter about a year ago (she was a few years younger than your daughter though). A previously picky eater, she rather suddenly became depressed and very avoidant of eating, with very OCD-like rules about food. We tried regular talk therapy for awhile and it was useless. The therapist claimed I was "giving her too much leeway" with food and that she must be acting out about some deep seated trauma (typical mother-blaming stuff!). Eventually she lost so much weight we ended up in the eating disorder unit at Stanford for a week. In her case, it turned out she was suffering from something called PANDAS and was treated with a combination of anti-depressants, anti-inflammatories, antibiotics and therapy.

 Now, that might not be the case with your daughter but no matter the underlying cause, I can highly recommend Elizabeth Burns Kramer in Rockridge, who specializes in eating disorders. http://www.elizabethburnskramer.com/ Elizabeth worked with us after my daughter came out of hospital and it made all the difference. She is super warm and kind and she helped us come up with some really creative strategies - not just talking! She is young too, and I think she would be relatable for teens. I can also recommend the book about childhood eating disorders called "Giving Food a Chance" by Julie O' Toole. It contains a ton of useful information and it reassured me that yes, my child was suffering from a eating disorder, and no, it wasn't my fault or hers! Best of luck to you and please feel free to reach out to me directly.