Cycling OCD

[SSS]

Okay, we've been holding steady on antibx protocol targeting Lyme, detox, etc. and the 'have to do/get this NOW, make it happen anger OCD' had left. It also includes kicking furniture and doors.

Suddenly, it came back yesterday, and this morning. No protocol changes. We did just have guests leave after a week visit (thank God). She held it together quite nicely for them.

Any ideas? Bartonella coming out? Or just the fun PANS ride of just when you think you can relax....bam!

Seeing a new PANS specialist next week, too.

Thanks.

[MomWithOCDSon]

Though we do see OCD behaviors cycle around in terms of what's more prominent versus recessive, a sudden return of a "forgotten" behavior would make we wonder about some fresh autoimmune onslaught, for sure. Something your guests (from another part of the country?) may have brought with them, though ordinarily innocuous, because it is foreign to DD, she's reacting to it? Or even a change in the pollen/mold count, if she's at all susceptible to that?

 

Or, it could be too that their departure (transition) is stressing her a bit, and that's translating into more behaviors. There's a paper floating around somewhere here about how stress contributes to a more permeable blood brain barrier, so in that respect, this PANDAS/PANS thing can seem like a merry-go-round that's difficult to get off. Not feeling well causes stress, stress opens the BBB, more nasties get into the brain where they don't belong, makes one feel unwell, feeling unwell increases stress . . . . . you get the picture. Stress can also contribute to higher histamine production which, in at least some cases, can help fuel stress-related behaviors (it does in my DS).

 

I'd keep an extra eye on her for a couple of days and try to keep things low-key to the extent possible. If it is the whole BBB thing, things might settle down within 24-48 hours.

 

Good luck!

Edited July 27, 2014 by MomWithOCDSon

[SSS]

Thanks Nancy, excellent points. I guess the good news is it doesn't last too long now (we've had ALL day before) and I can get her out of it fairly shortly if I'm on top of my game. It's just SO intense when it comes on for her, and I'm tired.

My DH thinks it's from holding it together all week from the guests being with us (same with after school time, holds it together there.)

As far as a guest carrying infections, I'd bet a high dose IVIG that YES, on that one. One particular person, who went on all the same camping trips and hikes as me in my youth, plus 100's more after, infected cats as pets, has erratic behavior w/ anger issues, joint pain, arthritis, etc.

Have I mentioned how much fun the visit was? *sigh*. We've decided that's the last time we host.

Anyway, looking forward to our new PANS specialist appt. next week.

Thanks again!

[emst]

Agree w PP that it is likely a guest brought a mild virus or bacteria w o even knowing it, also thinking that we are moving into mold season. What part of the country are you in? We're in lower NY State. It's starting to bother us -- plus I think we've been exposed to strep. What are you doing to treat the ocd on a day to day basis and what do you do for flares?

Thanks, hope it helps.

[SSS]

Agree w PP that it is likely a guest brought a mild virus or bacteria w o even knowing it, also thinking that we are moving into mold season. What part of the country are you in? We're in lower NY State. It's starting to bother us -- plus I think we've been exposed to strep. What are you doing to treat the ocd on a day to day basis and what do you do for flares?

Thanks, hope it helps.

*Thanks-- we are in dry northern CA, and dd9 has no seasonal allergies.

Are you saying your child is in a flare, and asking what is typically done when that happens?

If your child is on prophylactic antibiotics as a precaution, but then is exposed and starts a flare,

usually full dose antibiotics are then administered, or child is throat swabbed and checked, perhaps given another antibiotic.

Ibuprofen is used for inflammation, or another anti- inflammatory.

Our case is a bit more complex, as we are dealing with tick borne infections- Lyme disease.

We had a long break off antibiotics and treatment, last Spring my PANS dd9 flared from little sister

being 'typically' sick with infections from school-

my PANS showed no outward signs and symptoms of illness,

instead, rise in OCD and PANDAS/ PANS behavior.

At that time I put her back on an antibiotic (Biaxin) and it immediately reduced/ eliminated OCD PANS behaviors.

This event convinced my husband and I we could not give up, we had to try again to help dd9 and her underlying health issues,

which affect her mind, state of being, quality of life.

Edited July 28, 2014 by SSS

[philamom]

Good luck with your new appt. next week!

[BeeRae22]

Could it be a Lyme/bartonella reproductive cycle? Just a thought! How long since behaviors before this? You said she's been off abx? so maybe it was your guests exposing her to something too. Hopefully things have settled down since yesterday! My dd just had a "folate flare" that lasted the better part of a day.... Wow, I didn't enjoy that one bit I tell you!