We don't have all those specialists, we really just see the CT doc now, but have also seen Latimer and would see her again if we needed insight from a neurologist. That's just a list of the types of doctors those struggling with this disorder see.

DCurbanmom really isn't the right place for this type of discussion about docs and pros/cons of those docs. The latitudes forum is a good source of info and support. You just have to be willing and able to sort through what's useful there and what is not. There are also a few private discussion groups where the discussion can be even more frank about what symptoms people are dealing with and what specialists they see.

Thanks PP. We were just diagnosed by Latimer. I'd love to hear how you wound up with all these specialists -- it sounds like a lot of work but obviously necessary given how complicated all this is.

Partly those factors.

PANS is a multi-faceted autoimmune disease -- psychiatric and neurological symptoms caused by a wonky immune response to infections. It can be difficult to diagnose and NIH is still investigating effective treatment approaches.

Bloodwork showed my child had an underlying inherited immune system deficiency. Doc in CT is an immunologist with expertise in that issue. Latimer is an excellent neurologist, who provided some great insights into the neurological symptoms of my child but we benefitted from someone with expertise in immunology. Docs at MGH in Boston are a psychiatrist and infectious disease specialist. There's also a psychiatrist with PANS expertise at Dupont in DE and in Florida and some treating rheumatologists on the west coast. All have slightly different treatment approaches. We found one that is working for our child and stuck with it.

Pp -- why do you go to cr and mass if latimer is here? Is it for the reasons you say -- insurance and hard to get apt?

I agree that pandas is really really rough. My DC has it.

I'm a NP. Best neurologist in the area for PANDAS/PANS is Latimer in Bethesda. Long wait for first appointment, doesn't accept insurance. Many travel to specialists in other parts of the Northeast, such as CT or MA, including us.

If you can get accepted in the NIH study, do it. We couldn't get in it for a number of reasons. We had a very difficult year in which our child went from normal to totally falling apart before we finally figured out it was PANDAS/PANS (caused by long-term undiagnosed sinus infection). A very long course of antibiotics along with a short dose of steroids resulted in a big improvement but still no where near normal, and 8 months after diagnosis my child and our family were still really suffering. It took IVIG to get my child back to being functional -- my child also had an immune deficiency that we hadn't known about until bloodwork showed it. That immune deficiency got us insurance coverage for IVIG, thank God, because it runs $10,000+ per treatment.

Six months after IVIG my child is doing better than she's done since all this started and is on no ongoing medications (except allergy medication, which was needed pre-PANS) but we may do ongoing IVIG's if our child keeps getting infections and going into PANS flares due to immune system problems. PANS is really really rough and traumatic-- hang in there -- but there is hope and seeing your child finally start to come back after treatment is....no words can describe how much I treasure every normal moment that we have now after living through the depths of PANS.

The best public forum for advice from those who have been there is at latitudes.org. You might head over there for support and information.

Pp --thanks for the detailed response. We've recently been died w pandas.

2 questions: why was the steroid awful?

Who is your neurologist, and ped?

It depends on how long "it" has been going on ( a strep infection can go undetected for quite a long time). The first thing that has to be dealt with is killing off the strep ( antibiotics) and hoping that will do it.
There there is the inflammation of the brain ( sure, this is all controversial and PANDAS cannot be tested for via a "test" but if you have lived with it in your family, you know it exists). For some the inflammation goes down , naturally, once the strep is removed. If not, there are options like steroids ( awful experience for my child). If need be, IVIG or PEX can be done but they can be very, very expensive if your insurance co. does not agree that it is necessary.
For our child a tonsillectomy/adenoidectomy and a year long course of( twice a week) antibiotics seemed to work. Slowly. And we still have flare ups when exposed to strep or any viral infection. However, we are much more aware and have an amazing pediatrician and neurologist . Biggest suggestion when dealing with PANDAS, have every single family member ( including pets) tested for strep. You have to start with eliminating that, first.

I'm interested in hearing more abt the Ivig or other immunology. Does it work?

I've also heard of people removing tonsils. Not sure it works

It can also be treated w steroids

For my DS with it we didn't pursue any of those treatments. I would encourage you to talk to your provider to find the best treatment.

NIH was doing a study on the subject with Yale University, last year this time. Thought my son had it. He does not, thankfully.

OP,

I would talk to an actual doctor to discuss treatment. Start with your pediatrician to recommend someone who can test for this. If your pediatrician is skeptical, I bet you could find a recommendation here for both behavioral (e.g., OCD) and physical.

I don't think so - it's more a long-term course of preventive antibiotics, and then treating the symptoms.

A child with PANDAS would also receive some kind of immunotherapy, wouldn't they? Like IVIG or plasmapheresis (sp?). Just taking antibiotics wouldn't solve the underlying issues, I would think.

For those children who have PANDAS - it seems, from my research, that the treatment is the same as that which they would be getting anyway (CBT, antibiotics for the strp). Am I missing something? Is there any reason to explore whether a child has PANDAS if he is already receiving these treatments? I know PANDAS is controversial and I am not posting this to stir up any conflict. Rather, I am debating pursuing this and am wondering what the benefit, if any, would be. Thanks.