Treatment with Abx before Evaluation by PANS Clinic?

[WorriedMom1]

This is my first time posting to this forum. My now 8 year old daughter had sudden/severe onset of OCD in late Dec. 2014, which was accompanied by severe separation anxiety, huge mood swings/emotional liability, panic attacks and sensory needs. She has been out of school since mid-February. After much trial/error, her mood has calmed with SSRI but she remains extremely reluctant to leave the house, will not let me leave other than for short periods of time, and still has compulsions/obsessions. Stanford's PANDAS/PANS Clinic told me last week that they are not accepting new patients until July. They have (evidently) been closed to new patients since February. Our pediatrician is willing to start her on Abx now given the long wait to get into the Stanford Clinic. Curious to get forum members thoughts on whether this is advisable. Strep titers were run about 3 months after onset and were *negative.* So, at best, we are PANS. Second question, can anyone recommend a good child psychologist in Silicon Valley to work with our daughter. Many of the big names (i.e. Pediatric Anxiety Clinic) are not accepting new patients. I have looked on IOCDF website, but looking for individual references if folks have them. Thanks for the help. Monica

[Chemar]

Hello

I am bumping up your first post so others can respond

[jan251]

I don't know what a PANS/PANDAS expert would say, and maybe the more experienced parents here will differ, but as a mom with suffering child, yes I'd want to start on some antibiotics in the meantime, probably something straightforward like augmentin XR or zith, for a month or two. Even if it does nothing, at least the route will have been attempted (i.e., no response is information nonetheless).

 

If the ped is willing, I might also want to check some other titers, like mycoplasma, and possibly some immune parameters (IgG subclasses and so forth), additional information so that when you finally do see a PANS/PANDAS expert, there's much more information to work with and you might begin treating immediately rather than wait weeks for test results to come back (or who knows how many months for a follow-up appointment to go over results and come up with a treatment plan). I've seen lists of things to test someplace - let me see if I can find some - try this article, table 3 on page 5.

 

I would also look around to see if you can find another PANS/PANDAS expert to see while you are waiting. I put in a few calls and emails to the Stanford clinic last summer but never heard back (we are out of state but were willing to fly). In other words, I wouldn't hang my hat on being able to get in there in any sort of timely manner even once they start accepting new patients again (if they start accepting new patients in July, does that merely mean that in July they'll be willing to give you a first appointment that might be yet several months later?)

Edited May 19, 2015 by jan251

[kmacdonald34]

Yes I would start antibiotics. We took a bit of a back route with my daughter. She had onset around Christmas and it took me 1.5 months to get in to see an immunologist who worked with the director of the PANDAS clinic. She is part of the PANDAS clinic and she said it is recommended to start with the psychiatrist to rate symptoms but since I was there and my daughter was clearly struggling, she did her part of the evaluation and ran blood work and allergy tests. This ended up being helpful because we learned my daughter was immune deficient and had allergies. Her immunologist then put her on antibiotics which helped her. Within in a week we saw a difference and within a month a huge difference. About 2 weeks after being on antibiotics we saw Dr Williams who leads the PANDAS clinic at Mass General. He had me go back and rate her symptoms at onset and how they were after being on antibiotics for 2 weeks. It did not impact how he evaluated her. In fact we just got back from seeing Dr. Williams again…he has been so helpful.

 

So I guess that is a long response but yes, I would start antibiotics and just document how things have been going and how they go once on the antibiotics. Also my daughter never tested positive for strep but the infectious disease dr we see thinks strep is the trigger based on her good reaction to amoxicillin. YOu could also see if any immunologists or infectious disease dr work with PANDAS patients and can help in the meantime.

 

Good luck! Hope the meds work and you get answers at the clinic when you go. The PANDAS clinic at MGH has been awesome.

[MissionMama]

So glad to hear that your ped has agreed to try abx!! This is a great first step. If you are anything like us the abx should at least help a bit (inflammation) and best case you may see big improvements!

 

Thinking of you.

 

Kristi

[melmix]

One other thing - strep can be positive with three different blood tests ASO, Dnase, and Streptozyme.

Not sure if all were run but one can be elevated while the others are not. That said my son was positive for all 3 and

also mycoplasma, lyme, anaplasma, HHV6, and CMV so there are many infections that could be causing it.

Melrmix

 

[mama2alex]

melmix makes a good point - there are a number of infections that could be contributing to your daughter's illness. I'll PM you the names of a couple of great doctors in the Bay Area. They will test/evaluate for all potential infections and will prescribe targeted abx and/or antivirals for anything they find. They will also look at allergies, vitamin/mineral deficiencies and other potential contributors.This is a much better path than trying a random antibiotic and waiting weeks/months to see if it helps. Bottom line, don't wait!

 

I have never found a wonderful therapist in the Bay Area. We went to the OCD clinic in S. Florida a couple of years ago and it was well worth it.

[tj21]

YES, I concur with others here - start abx while you figure out next steps. Add a good probiotic that doesn't contain strep (albeit 'inactive'), Klaire DeTox.

 

We see Amy Smith NP/RN up in Sebastopol. She does phone consults but then it's out-of-pocket with insurance. She's been treating our son for over a year. PM me if you would like more info.

 

Hang in there!!