Can it be PANDAS without strep or elevated strep titers?

[Jordansmom]

Hi! THis is my firs post here, although I've been reading for months. About 6 months ago, my 7-yr old son had a sudden onset of pretty significant motors tics (thrashing his head side to side, shrugging shoulders, sniffing/snorting, etc). After seeing two pediatricians, and one neurologist who was completely clueless, I finally found (through a ton of research) a ped. neurologist who specialized in tic disorders, Tourettes, and Pandas. He immediately thought that Jordan had PANDAS, and prescribed Zithromax for a week, and ran a complete battery of blood tests (all the titers, etc.) After a week on Zithromax, the tics essentially disappeared, although all his blood tests came out negative (even the strep titers were all within normal range). The Dr. thought that the tics could still have been caused by another type of infection (like a staph infection) that could not be detected in the blood, but responded to Zithromax.

 

Fast forward to July ... same thing. Sudden recurrence of tics, negative blood tests, but tics responded to Zithromax within about 10 days. He was tic-free all summer, but they recurred again on Friday. Dr. again put us on Zithromax, although it is too early to see if it is working.

 

Of course, I'd like to believe it is a type of PANDAS, and that the tics will again respond to Zithromax. However, I'm wondering if anyone here has been through something similar. Could it really be PANDAS after all his blood tests come out completely normal? It would be nice if the antibiotics were a "quick fix," but I wonder if these are just "transient tics" that come and go. I'm so disturbed by this whole thing ... my heart is just breaking for him ...

 

Thanks for any input,

Julie

[ad_ccl]

Hi there,

 

There is also PITANDS - ped. illness triggered auto-immune disorder assoc. with strep. I had thought you needed the initial strep to cause the first onset of tics - but you could look into it a bit more. Sounds like illness is triggering him, so I would not be surprised if some other kind of bacterial infection is doing something. My son has increases of symptoms with viral illnesses. Ronna's son had a increase with chicken pox - again - all immune based. Have you thought of remaining on the antibiotics prophylactically? That is what many do with PANDAS. My son is on azithromycin once every 5 days.

 

Good Luck.

[Jordansmom]

Thanks for the info. I did forget to mention above that we have been on Zithromax twice per week since the second "outbreak" in July. That's another reason why this is so confusing ...

 

Julie

[CKJ]

Thanks for the info. I did forget to mention above that we have been on Zithromax twice per week since the second "outbreak" in July. That's another reason why this is so confusing ...

 

Julie

 

Were the blood tests you mentioned to measure the strep antibodies or something else?

I'm certainly no expert but do recall reading that strep can be anywhere in the body - not just the throat. If there is strep present elsewhere, a throat culture won't necessarily come back positive. I've even read that strep can hide in crevices in the tonsils and not be detected with throat cultures. I would guess the antibodies would be present in the blood though if that is in fact what they tested his blood for.

[Ronnas]

"PANDAS" is an acronym for "Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections." Another acronym that appears less frequently in the literature is PITANDS (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders). The terms "PANDAS" and "PITANDS" may not be not wholly interchangeable. A. J. Allen, MD, distinguishes between PANDAS and PITANDS, where PITANDS includes triggering by bacterial or viral infection. In his usage, PANDAS would be a subset of PITANDS [personal communication, November 25, 2000]. While research has focused on bacterial infections, there are clinical reports of viral infections also being associated with acute onset or dramatic exacerbation of OCD or Tourette's Syndrome [see, for example, Budman et al., 1997].

 

Although the majoity of the research has been into strep (I think due to the ease of testing for it re: throat cultures and titers)...with time I do think that PANDAS will be shown to be a subset of PITANDAS.

 

Given your son's positive results to the azithromycin the first time, hopefully he will follow with much the same this time.