Pityriasis and Pans/Pandas Link?

[JsMom2014]

Hello, 

I haven't been on this forum for quite some time as we were in a pretty good place for quite some time, but we are back in the trenches and I am still actually trying to figure out if my daughter's anxiety (and mild to moderate OCD) is connected with PANS.  We have been experiencing a flare since August, with no end in sight.  The anxiety and rages are high, emotional regulation is at an all time low and while I don't see many OCD symptoms, at 8 she is wise and tends to hide any behaviour that she knows aren't "normal" (her words, not mine).  It's been 3 years since things were this bad but I recently made a connection that is putting me back on the PANS/PANDAS track.  A few years ago while we went through a similar tough 6 months, in addition to several rounds of strep throat, she developed a skin rash that was diagnosed as pityriasis lichenoides.  It was on her trunk and arms and basically looked like she had the chicken pox for several months. It eventually went away on it's own.  Here we are back with a major anxiety flare and once again, she has a rash - this time the doctor has suggested it is pityriasis PLEVA (just another version).  Due to my daughter's phobia of any medical doctors, a biopsy to confirm the diagnosis is out of the question.  Now, finally onto my question....  the doctor has prescribed a 3 month oral antibiotic to deal with the rash.  While I would normally decline such a treatment (as I know the rash does eventually go away on it's own), I am tempted to go down this path - more to see if there is any improvement in her anxiety as a result of being on antibiotics.  I did have her tested for strep about a month ago just out of curiosity and it came back negative but we have been in a flare since August so it's possible we just missed it.  After much reading, I do see that Pityriasis is an auto-immune disease and it can be triggered by stress so it is possible the rash comes out when her anxiety is high and it is still not Pans/Pandas related but thought I would jump on here to see if anyone else has thoughts on this.  The antibiotic the derm prescribed (unaware of our pans/pandas thought process or anxiety patterns) is Erythromycin... if she is in fact dealing with a pans/pandas flare, do you know if this med would be one that is sometimes used to treat the inflammation/infection/virus?  

 

Thanks in advance.  Totally at a loss.  It's been a long 5 months and with each day passing my empathy decreases and my frustration level increases.  All of the parents on here dealing with little ones who struggle on a daily basis, my heart goes out to you.  It's not for the faint at heart.. 

Thanks again and happy Friday everyone. 

[bws1565]

My DD was diagnosed with pityarisis way before we ever heard of PANS.  Looking back, we realized that the red purplish streaky rash was indeed a Bartonella rash.  This indicated that we were dealing with Lyme/Bartonella and not Pandas at all.

The rash disappeared on its own after about 4 weeks.

[MountainMom]

bws1565 are you saying that your child had bartonella and not Pans? How could you tell the difference? Or, did you mean the rash indicated it wasn't pityriasis?

Curious! Thanks!

[JsMom2014]

Our is definitely not the typically bartonella rash. Our is not purple streaks, it is red scaling bumps that start as clear raised bumps and eventually get a small scaly surface before as they start to go away.  The skin underneath is often left with a light scar (no pigment) for a few weeks and then gone.  They come in crops.  

[bws1565]

Here goes interesting.......

 

Approximately ten years ago DD18 has a purplish streaky rash which the dr diagnosed as pityarisis.  It disappeared after 4 weeks, and I thought nothing of it.

It was on this forum that I found out several years later that a purplish streaky rash is bartonella, and that led us to the correct diagnosis.

DD9 is coming from the dr. office now, with a diagnosis of pityarisis.........   It does NOT look that purplish rash we had a long time ago. It would rather be mistaken for chicken pox without the head. Either there are several types, or the first doctor misdiagnosed.  Either way, I read online that people who have pityarisis rashes should be evaluated for dormant viruses, bacteria or lyme.

Edited December 20, 2017 by bws1565

[bobh]

I have not heard of Erythromycin, but if it were me, I would go along with it and see if it happens to help any PANS symptoms.

Skin rashes of various types are quite common among PANS children.

I understand PANS to be triggered by many infections, (e.g. lyme, see https://www.youtube.com/watch?v=qDuxlDWMgso ).  So, I believe that it is possible to have, for example, PANS that is caused by bartonella.  Bartonella as a trigger, PANS as a kind of auto-immune reaction that affects also the brain.

 

Edited December 20, 2017 by bobh