PANS/PANDA with negative ASO titer? So desperate!

[EAMom]

Also bear in mind that if you check titers "too early" or "too late" then you may miss the elevation of a past or current strep infection. Ideally you should check titers at onset of symptoms (to get a baseline) and again 4-6 weeks later to see if there is a RISE in titers.

 

A single elevated titer doesn't tell you if that infection is current or was from a year ago (since in some people, titers can stay up for quite a while).

 

If you drew titers after 1-2 weeks of symptoms, that may have been too early for the body to respond with a rise, so I would recheck in 1 mo.

 

Also some kids have a very low baseline, so even if they do get a titer rise, it doesn't exceed the upper limit of normal. So, it looks "normal" when in reality it is elevated for that particular child.

Edited November 7, 2013 by EAMom

[nicklemama]

Dr K and Dr T are the real deal and many of us have paid for phone consults. We live 5 hrs from Dr K and saw him in person and then twice for IVIG and follow ups. Did phone consults with Dr T.

Edited November 7, 2013 by nicklemama

[MissionMama]

Good grief - I have no idea how to set up notifications on this darn thing!!! I am shocked at all the responses here!! I have only been alerted to PM's....such a newbie.

 

Thank you all so much for your thoughtful responses!! The past couple of days have been huge, as my dragnet approach to calling and emailing everyone I think would be able to help....some of that has paid off immeasurably.

 

1) We have been fast tracked past the 3+ month wait to see one of the top pediatric immunologists here in Seattle, our appointment is Tuesday.

2) Confirmed phone consult with Dr. K for 11/18

3) Corresponded with Dr. Thienemann (Yes, both Dr. T's confusing...but I figured it out!), and she was great, and also validated Dr. K.

4) Our ped contacted Dr. Swedo directly - she suggested abx immediately (thank goodness, as I had requested this over a week ago, but I won't stay hung up on that...). So, we are 2 doses in to a 21 day 2x per day of Cefdinir.

 

I don't know what many of your ds or dd's underlying health situations were, or (mis) diagnoses have been, but I think that because my son has a completely clean health history for his 11 years of life (Minor sensory issues as a toddler that he modulated and just worked through has he matured....which was clearly harder than most kids I have known (my dd!!), but certainly nothing close to seeking formal intervention for), people are paying attention to it.... my first fear when he fell off the cliff was that he must have actually gotten into some sort of toxic matter!!

 

Anyway, we have things moving....but as each of you so painfully know (and way more than me, for much longer) it never moves fast enough...

 

More thoughts?

 

Thank you .

 

Kristi (on a) MissionMama

[MissionMama]

HI MissionMama,

 

I haven't read all the responses carefully.

 

But....

#1 did you get a throat culture on your child? Did you also throat culture family members? My PANDAS dd never got elevated strep titers but both she and her sister were positive on throat cultures. If your child (ren) are positive (or you are, or dh) you need to know and need to clear them (with antibiotics). There is a lot of "stealth" strep around which doesn't have typical symptoms (sore throat, fever).

 

Check out this thread http://www.latitudes.org/forums/index.php?showtopic=16476

 

ASO titers are a pretty inexact way of telling if and when somebody had strep, however, since you already had ASO titers (did you do anti-dnse b titers too?) you should repeat titers in about 4-6 weeks to see if there is a RISE in titers.

 

That said, strep isn't the only infection that can trigger sudden onset OCD. Mycoplasma and Lyme are others.

 

As far as No. CA docs. Here is a list of doctors that could be helpful. http://pandasnetwork.org/resources/providers/provider-list/ I would probably recommend Dr. Schweig over Margo T. Margo is great but being a psych, she would have to refer you to Stanford (PANS clinic which doesn't take out of state and has a long wait list) to get labs and check for infection etc. Dr. Schweig can get you in sooner and will do all the testing (and more) that Stanford would do.

 

I think Dr. K is too far to go from the West Coast and personally, think Dr. Schweig will do a better job of looking for underlying issues aside from just strep.

 

BTW, strep is not a virus. It is a bacteria (which needs antibiotics). I just wanted to clarify since you will be probably be dealing with many doctors in your quest for treatment and it's good get that straight if you want a better chance of being taken seriously! (Note: viruses can trigger exacerbations in PANDAS kids, esp once the "wheels" of autoimmunity have already started with a prior strep infection. Some of the "better" PANDAS docs will know to check for certain viral titers as well .Some of these kids with evidence of viruses on blood work have been successfully treated with anti-virals. For my dd, H1N1 and fifth's both triggered subsequent exacerbations a couple of years after PANDAS became full blown with strep.)

 

Yes, throat culture was negative (both rapid and 48 hrs. to the lab)... I will look at Dr. Schweig, thank you.

[rowingmom]

You may want to retest in 2 weeks and see what you get. But even if that too is negative, it doesn't rule out Pandas. Kids don't go suddenly nuts for no reason. Other infections also trigger Pans. Lyme, bartonella, viral infections, mycoplasma pneumonia - to name some of the more common ones.

 

 

Please don't assume that PANS/PANDAS is always caused by strep. If the tests don't point to strep look elsewhere: bartonella, mycoplasma, viruses.

[anonymous0121]

I feel your pain MissionMama! You wanted to know if anyone had experience with Dr. K. My ds15 was first diagnosed with PANDAS by Dr. T in NJ. We saw moderate improvement with abx, but a decline when abx were stopped. Dr. T had mentioned to me that Dr. K has more experience with adolescents so when Dr. T stopped replying to my phone calls and emails, I contacted Dr. K. Unfortunately, Dr. T had some family illness issues at the time. Dr. K helped my ds temporarily, but said he needed IVIG which we did in June. I think part of the problem with switching docs and doing everything by phone and email, is that some important points are missed. The IVIG did not work so thanks to the great people on this forum, I found an LLMD. My ds was diagnosed with Bartonella last week and possibly Lyme too. We will get lab results the end of this month. LLM has been a great resource for me. One of her thoughts was that not all docs have all of the answers. So Dr. K is great at diagnosing and treating the strep if that is the only cause. Dr. K will also do phone consults which can be scheduled fairly quickily.

Best of luck to you.

Aggie

can you P M me your LLMD's name and also how you contacted dr K, my son needs help badly, we live in northern California...

deborah

[pr40]

one encouraging thing is how quickly the PANDAS treatment seems to be changing at least with some physicians. Call to Sweedo, abx right away -- I am impressed and heartened that medical profession is slowly but surely coming to our point of view.

[nicklemama]

My son was perfectly healthy, no issues when he fell off the cliff. I thought he had a brain tumor.