How do you know which came first - the strep infection or the neuropsychiatric disorder

[eileenm]

My "quirky" 7yo son has been diagnosed at different times with High Functioning Autism, Tourettes, OCD, Aspergers. At my request, our paediatric neurologist ran blood tests including a Dnase test and to his surprise, my very physically healthy son's Dnase titers came back at 1300+. But my son has not been ill in ages, and in fact the last time he was sick enough for antibiotics was a pneumonia episode 4 years ago. Is it possible that a strep infection has been raging in my son's body for four years, and that his symptoms have been neuropsychiatric in nature rather than the typical sore throat that I so often had as a child? Or could these Dnase levels be purely coincidental? Surely people with autism/ocd/anorexia pick up bugs along the way after their psychiatric disorder has developed? My question is, how do you know which came first - the strep or the neuropsychiatric disorder? In our case we don't know when he could have had a strep infection, and we also can't pinpoint when his "differentness" began.

[jan251]

I don't think anyone knows for sure, though different docs have different theories. In this case, I might consider the possibility of immune system disfunction such that he may not often show sick symptoms because his immune system does not mount a proper response. Have you done any testing of immune parameters? How about the Cunningham panel?

 

An additional question may be: which came first, the infection which in turn depresses the immune system, or the immune problem allowing infection? There are differences of opinion on whether PANDAS is simply due to infection that needs to be treated - which appears to be the case for some kids who recover quickly on antibiotics - or much more complex immune disfunction, which seems to be the case for other kids, perhaps especially those with more issues going on. It seems to me that both can be true. Fitting into little boxes of PANDAS vs OCD vs ASD, etc. may indicate something but not necessarily much; one of our docs believes issues such as ASD arise from inflammation as well as PANDAS.

 

FWIW, my ds has a long history of sensory issues, developmental delay, etc. though the OCD was sudden in onset. Looking back, we see a likely immune deficiency since birth (long story).

Edited November 14, 2015 by jan251

[qannie47]

Was there ever a time when you had no concerns about your son? For example, when my doc and i timelined it..we found the strep/quirky behavior going back to age 2. The big storm hit age 6...

Yes...strep could have been hiding for years with no symptoms...that indeed happened with mine and no symptoms. 6wks of abx wiped out the last of strep when dx and bingo...years of rls went away like magic. It could be pans or one of the other dxs your son got or even a mixture..time will tell. Most important is that cking out pans is important because so much has been learned and the ripple effect from the theory has altered old school mindsets. Point is even if not pans traveling down this road will most likely result in some ahas and help your son in some way...

[MomWithOCDSon]

Yes! Kids can be unresponsive to strep infections in the classic, physical way but display behavioral symptoms as a result of the immune response! My DS was/is exactly like your son; he's never had a classic strep throat episode in his life, but his titers were exceptionally high when we finally had them tested. And once we knew what to look for, we realized he was like a canary in a coal mine with respect to incidences of strep among his friends, classmates, family, etc.

 

I would suggest journaling regarding behaviors, as, with kids like ours who will likely never have positive strep cultures, beyond titer blood tests, this is the only way to document temporal links between the immune response (behaviors) and strep exposures.

 

A published example of this asymptomatic stress response is in Beth Maloney's book "Saving Sammy," a seminal account of PANDAS in a young boy.

[WorriedDADNMOM]

I would echo Qannie on this. For us it was around 2 years old.....right after 2 yo MMR.....and again at 6 after 60month MMR booster.

 

As the the chicken and egg question......I would say some genetics play a part, immune dysregulation in response to the shots could be the cause.....I don't really know. Strep and Impetigo were known things that happened previous and during major issues. Totally asymptomatic for strep. Really bad during period with very high titers to Mycplasma P....again...more immune dysregulation.

 

Pandas/Dan doc from Ohio really helps(ed) us get to where we are at.

 

Best of luck to you!!!