OCD & Anxiety - still thinking PANS or LYMNE

[JsMom2014]

HI Everyone,

It's been a while since I have been on here. I originally joined when my psychologist suggested we consider Pandas/Pans regarding our daughter who has had anxiety and OCD symptoms come and go for a few years. We were seen by Sick Kids Hopsital in Toronto and the dr suggested he didn't think it was Pandas as our daughter had never really returned to baseline (the anxiety has remained) but the OCD and a few minor tics come and go. I guess I just accepted the OCD diagnosis but I keep coming back to Pans as a result of my daughter's history. She is almost 6 now...but I wanted to share her story and see if I can get your take. We have an appointment on Wednesday at Sick Kids again and I am wondering if this is worth bringing up again.

The story:

dd has always had a pretty rigid personality from birth. Inflexible and very sensitive.

first ocd type behaviour (although we didn't see it as this) started around 4 when we went through a period where she would pretend to be a girl name sara eveytime we came in the front door. The game lasted about a month or so and she would not let up.

Aside from that a period where we went through of constant 10 perfect cartwheels in a row and lots of sorting/organizing...we didn't really see OCD behaviours.

***This is the important part I keep going back to***

Summer 2013. We went to a friends farm..on a hay ride. Few days later she had a few "bug bites" that slowly spread over the course of several weeks. After being referred to a dermatologist, he said she had pityriasis lichenoides. An autoimmune disease that made it look like she had a mild case of the chicken pox...spots would appear, scab over and from onset to disappearance, each spot lasted about 3 to 4 weeks. Research showed to get this "virus" she had to be a carrier, come across with strep and or hand foot mouth (and she had both this summer from the daycare). Stress and anxiety made the spots worse..but it basically cleared on its own after 4 months. To this day we still get one or two spots that come up out of nowhere (most recently one on the back of her shoulder) but since the summer of 2013 we have never had a case again where her torso was covered).

The rash disappeared for the most part by November 2013.

January 2014, rages started. Very aggressive behaviours toward me - literally out of nowhere.

March - we had germ issues and full on anxiety (not wanting people to come to our house, constantly needing reassurance, couldn't be alone in the house, no longer able to sleep alone, etc. Cartwheels became critical again. Tics (nose scrunch and throat clearing) appeared in May 2014 and they come and go...and are pretty mild. Noticeable to us as it mainly occurs at night when watching tv.

The rages tappered off that summer and didn't start back up again until last month.

During this period she was diagnosed with several anxiety disorders and OCD in October of 2014.

The last month was pretty bad...rages, obsessing about a kid at school, chewing on her hair constantly, etc. Then within the last week...things seem to be good again - much more in control and anxiety is at an all time low.

We have never done bloodwork due to her fear of having blood taken and I worry we will never get her to a dr again if she goes through bloodwork. It will be traumatic to say the least.

We are not on meds at this point. She is on a waitlist for OCD therapy at Sick Kids and she just started seeing a new art therapist.

I feel like I am going crazy - back and forth between being in crisis and then having her do really well...until the next time?!

 

My questions. based on this....I did some research today on pityriasis lichenoides and found out it is common in lyme patients.

Does anyone on her have experience with pityriasis lichenoides and should I continue to research a connection to lyme?

We are at a point where we are considering medication when the next episode hits (if it happens to be a long cycle) and I am so nervous to do this if I might be treating the wrong thing.

What if OCD is the wrong diagnosis?

Anyone....

T

[pr40]

given this history, and her auto-immune disease, I am not sure how can anyone diagnose your child with just OCD.

It seems obvious that there is a significant autoimmune issue and that it might have OCD as one of its symptoms. the question is what you should do.

you may want to start with usual blood tests -- there is a list among the pinner materials.

and go from there.

it is hard to direct you without having at list some test info.

I would also do a lyme test, just in case.

[ktdommer]

Jsmom

How is your health? Could you have passed on Lyme? Because your child had symptoms sort of before bites, it made me wonder. You may not even know you have Lyme. Insect bites then may have carried something that overwhelmed her immune system.

I would try Igenex testing. Lymetap.org can help financially with the testing.

Any headaches, joint pain etc? Has ANA showed positive?

The unknowing is really hard! Any chance you could get to an ILADS as doc?

K

[mama2alex]

Sorry you are going through this! First off, not "returning to baseline" does not rule out PANS. It might exclude you from a research study, but in the real world some wax and wane, and other stay the same until they're properly treated. Our son didn't get better until we identified the infections and started treating them. Second of all, as pr40 mentioned, her history definitely points to autoimmunity and infections. An experienced PANS or Lyme doc would recognize this. Our son was also inflexible and sensitive from birth. It turns out he has congenital Lyme. If she's afraid of needles, you could start by seeing a Lyme doc yourself and doing any blood tests they suggest. If you have Lyme, you probably have your answer right there, given that she's had issues all her life and developed the OCD, etc so early. Even if you don't have Lyme, I'd keep researching the infectious/autoimmune connection. Keep asking questions here - there are a lot of folks who've been through a lot and will help you if they can.

 

 

Oh, one other thing, a lot of PANS kids are very sensitive to psych meds and sometimes have paradoxical reactions, so step carefully there. If you're going to try it, start low and slow and watch for any behavior changes.