the AS in PANDAS

[ibcdbwc]

I'm sure there is a thread on this but I can't find my specific answer. To me it seems that PANDAS children may start with a trigger of strep and then possibly morph to PITAND since they respond to other triggers (mycoplasm, flu, lyme, allergies...). Can someone explain the difference between PANDAS and PITAND? Since the two are so very closely related, are we doing ourselves a disservice when we heavily promote the acronym of PANDAS. Why is it that the larger umbrella of PITAND is not promoted (at least in comparison to the subset PANDAS).

[dcmom]

PANDAS is the acronym coined by Swedo when she started defining and studying the disorder. I think, to simplify things, for scientific/study purposes, it was helpful to have more narrow criteria. She does definitely state that while the children she has studied were initially triggered by strep, they go on to have symptom exacerbations with other triggers. She started studying PANDAS, I believe, in the context of Sydenham's Chorea- which also starts with strep. I think, we do not know if the disorder needs to be initially triggered by strep- but certainly it is possible that many parents "miss" the initial strep trigger, even if it happened.

 

I have two daughters with pandas. The youngest, diagnosed first, was triggered by culture positive strep, and had overnight onset of ocd. She fits neatly into Swedo's box, thankfully, because it made getting help much easier. My other daughter, in hindsight, was triggered by strep at the same time (very few classic strep symptoms, only cultured several times because of sister). She had a very mild onset of ocd, which we missed, and mistook for difficult stage/behavior. Nine months later she had an overnight debilitating onset of ocd from H1N1- and we were sure it was pandas. She did not fit so neatly into the Swedo box, and would have been harder to diagnose, without sister.

 

I think, the main problem is, scientists HAVE to set up parameters for a study, in order to get clear results. These parameters should not be used to diagnose, or determine insurance coverage. Doctors should be open minded, scientific, artists- who practice thoughtfully and carefully, and LISTEN to the parents. If your child changes overnight- they should not put the child off to psych- it doesn't make sense. IMHO it is not the acronym or the original study that is messed up- it is our healthcare system

[kimballot]

I want to second what DC Mom said - A group of PANDAS/PITAND experts got together last summer and the name of the disorder was one of the issues they discussed. As a result of that meeting, Dr. Swedo is writing a "white paper" (This is an early version of a position paper or a guideline). We are all anxiously awaiting that paper. Dr. Cunningham presented at Autism One yesterday and in her presentation she stated that the name for the disorder will be changing to PANS (Pediatric Acute Neurologic Syndrome), and she acknowledged that exacerbations are most commonly triggered by strep, mycoplasma, lyme and viruses. I am not sure if this will be the final name, but I suspect the "strep" part of the name will be removed.

 

The Autism one conference presentations are available online. This thread discusses some of the PANDAS related presentations.

Edited May 30, 2011 by kimballot

[ibcdbwc]

THANK YOU!

[nicklemama]

Dr K told us he was supporting a name change to PANS when we saw him 3 wks ago. We believe my DS was originally infected w/ strep as an ear infection but we have no documentation of strep because he didn't present as strep, so not tested. His major exacerbation that caught our attention and led us down this path was after a FluMist vax. I guess officially, he is PITANDS, although Dr K used the PANDAS term.

[peacebstill]

A little more help for clarifying? I'm feeling very slow to understand the difference!

 

PANDAS - associated with Strep A only?

PITAND- associated with any infection - wider umbrella? could be triggered by an inital strep or any infection?

 

 

 

Paediatric Infection-triggered Autoimmune Neuropsychiatric Disorders

Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci

 

If connected to or caused by LD...would it be more right to line up under PITAND than PANDAS?

 

Jennifer