PANS/PANDA with negative ASO titer? So desperate!

[MissionMama]

My cockpit has been hijacked.

 

Over the past few weeks we had noticed that some of my son's behavior had been unusual for him. While perplexing, we coped, help him cope, and chalked it up to adolescence, increased academic demands at school, his maturity and an increased desire to be accountable, successful, blah blah blah.

When I returned from my daughter's 3 day field trip just 11 days ago I was greeted with mayhem. Sudden, acute, confusing, helpless mayhem. We limped through the weekend, and then took our son to his pediatrician first thing Monday morning, and spent half the day at Seattle Children's Hospital. While our son was deemed "safe" to go home, we had few answers... but the term PANDA was used. A complete blood workup was done, off we went...back home, with our son that was not our son. Initial blood work was "normal", though his white blood cells and platelets are low - only to indicate "not much, he is either fighting or recovering from fighting a virus". The one test we would have to wait for was called an ASO titer, to see if AJ has or has had in recent months had the strep virus.

Back to PANDA....research, read, freak out...this is my absolute diagnosis of course, this had to be it. My husband and I are dumbfounded at what we read, that something like this exists. Though we are so worried, at least this must be it. The ASO titer must come back elevated to show the evidence of the strep antibodies (or something like that....basic explanation). Not so fast. We found out that the titer was normal, not elevated, no sign of the virus. My hope quickly returned to despair, and we are now forced to begin the transition from an immediate medical explanation to explore a more immediate clinical explanation and begin treatment.

We have been able to scratch our way past the sometimes months long waits into one of the best pediatric psych clinics in our local area. We met with the psychiatrist yesterday, most information gathering. We are trying to get into see an immunologist, with the help of both our pediatrician and the psychiatrist as everyone agrees that this is "atypical". Two weeks ago our son was one of the stars in his class play, and now he is plagued with OCD behavior, mood swings, and is unable to even see his best friends. I am researching experts on PANS/PANDA outside our local area (Seattle) as we are desperate for the help I think we need. In my heart of hearts, there absolutely must be a medical reason for this drastic and terrible change in our son.

Thank you for reading this....and I am looking for any morsel of help, and input from others that have been in the same position but have come out the other side and returned to life as you once knew it. I am filled with despair, helplessness, and total fear.

I have identified a couple of doctors whose names I have seen several times with respect to PANS/PANDA....if any of you have personal experience from either of them, please help. Out of Chicago - Dr. Miroslav Kovacevic and out of Palo Alto - Dr. Margo Thienemann.

[3bmom]

My heart reaches out to you. It is like someone has kidnapped your child's brain. I am fairly new to this forum but I think there are threads talking about what tests. We had low ASO but slightly elevated antiDNase B. our biggest surprise was HHV-6, 15x normal and elevated Myco. Everyone tends to have a different tapestry. We had brought our son to a Dr in Redmond ( I am originally from Seattle) I think her name is Kellar. Three days before the appt. behavior got worse and we went to ER at children's in Seattle. They refused blood work even with all my medical documentation. Glad to see there is some change. I don't know if Kellar is open to new patients. Dr Thienimann is recognized in the PANDAS community along with Dr. K who I believe does the IVIG. Dr T will do phone consults but I hear he is hard to get a hold of.

 

Will your pediatrician prescribe antibiotics? Antivirals? We see an immunologist/ NIDS (Neuro Immune Dysfunction) in LA, Dr. Michael Goldberg. The first thing he will do is diet. He now recommend Paleo/caveman diet. You can start that. Removing Dairy helped with mood and obssesions. Our son had hidden life threatening allergies and now his IGg is normal. It's all about removing layers taxing the immune system which you will learn here. You will get him back and you have support here. Hugs, 3bmom

[LNN]

ASO is not a way to rule out Pandas or Pans. ASO is one of two tests that look for antibodies against strep bacteria. It starts being made by the body 1-3 weeks after the start of an infection and peaks around 3-5 weeks. The second antibody you can test for is called Anti-dNase B. It peaks 6-8 weeks after the start of an infection.

 

So a few things - if you tested at 11 days after the sudden onset, the ASO titers may not have been elevated enough to test positive yet. Second, not all kids produce elevated titers. Ed Kaplan, a researcher who knows more about strep than most, conducted a study several years ago. Buried in his findings is that something like 63% of kids in his study had ASO titers. Well that means 37% had strep but didn't produce titers high enough to be positive. Swedo herself says don't chase titers. Labs report based on a "normal" range of responses. But some people always have higher titers than the average, and have no infection. Some always have low titers, even with confirmed infection. You need to know what's normal for you. And what's more important is the direction of the titer levels. If they're rising, it indicates a recent infection, If you test a few weeks later and they're falling, it indicates a resolving or resolved infection. Direction matters more than numeric value. Also, if you test at the wrong time and miss the peak, the test is meaningless. It's like sleeping from 6 am to 6pm and insisting that the sun never rose. Of course it did. But if you have your eyes closed at the wrong time, you won't see the sun. But that doesn't mean it wasn't there.

 

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.

 

You may want to read the pinned threads at the top of the forum for some helpful articles, experiences and resources. There are a few members from Washington on this forum. Hopefully they'll contact you with some local doctors. If you have a sympathetic doctor, ask him/her to prescribe a 30 day course of augmentin or azithromycin as a trial. Here are a few good articles to present to them: http://www.ocfoundation.org/uploadedFiles/MainContent/About_OCD/Expert_Opinions/IOCDF%20Expert%20Opinion%20-%20PANDAS%281%29.pdf and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2413218/

 

You asked for a morsel of hope. My son was stricken with Pandas in 2008 (but had undiagnosed lyme that wasn't found until 2010). It took us 4+ years of treatments, false starts, missing pieces...but he is in a great place and is healthier and better than he's ever been in his entire life. Recovery is rarely as sudden as the onset, but you can - and will - get him back.

[cobbiemommy]

Titers do not tell the tale. Our immunologist in Omaha sees them as an indicator, but not definitive. Would your primary care provider prescribe Augmentin or a steroid taper? Some would disagree with me about the steroids, but they absolutely gave us our son back for a short time. At least we knew what we were dealing with was autoimmune in nature.

 

I wish you all the best as you go forward. Though this is little consolation; since your child is older, it will be easier to make the case with the doctors that this is not autism or conversion disorder. Good luck.

[bigmighty]

My DS was accepted into the NIH clinical trial and his titer score was deemed "too low to calculate" during his initial exacerbation. He did have an elevated Anti Dnase B test, indicating some sort of autoimmune challenge. But he has never had an elevated titer score then or during subsequent cases of strep.

[JuliaFaith]

We live in the Seattle area and will PM you some doctors we are still seeing.

[nicklemama]

The most important thing you should know is having high strep titers is NOT a requirement for a diagnosis. PAMDAS is the form involving strep. There are other infections that trigger this. It's called PANS. My son has had PANS for 4 yrs, diagnosed 3 yrs ago. Dr K in Chicago is our expert treating doctor. We have a doc locally we are working with day to day. Being perfectly fine one day and falling off the cliff the next is a really telling sign and that's exactly how it happened for my son.

[sf_mom]

JuliaFaith will have some great local recommendations that can get your son well.

 

Just an FYI..... we are local to the Bay Area and we now have at least 8 wonderful Dr.'s in our area that treat PANS and understand to look for infections/issues well beyond just strep.

 

Wishing you all the best in your search to get help and son's recovery. Keep the Bay Area in mind but I don't think you'll ever need to move beyond the Settle Area for great help.

[Aggie103c]

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

[EAMom]

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.)

Edited November 6, 2013 by EAMom

[MissionMama]

Thank you to everyone! I do have a phone consult scheduled with Dr. K for 11/18. I am ignoring the part where sending $500 payment in the mail feels sketchy to me, due in part to how many others on this forum have likely done the same thing.

 

JuliaFaith has sent me wonderful local recommendations, thanks Julia! SF Mom, we are not opposed to considering the Bay area, I will PM you. Aggie, a local MD (recommended by JuliaFaith) is not taking PANS patients...but did recommend both Dr. K and Dr. T....so again, some validation that we are on the right path and not completely going off the deep end with the drag net.

 

We have called in every possible favor, and luckily one of our friends (a physician) went to med school with one of the immunologists at Seattle Children's, so I am not too proud to use the personal connection. I hope then we will rule other potential causes out.... I hope that the fact that my son has had not a single health issue, or any other diagnois, that could cloud what is happening that it will lessen the complexities to weed out. No medication on board, no supplements (not that I am opposed, but we just haven't seen a need).... all my thoughts so jumbled. I also recognize, as mentioned by cobbiemommy, that having an 11 yo that can communicate effectively, with the previously mentioned clean health record, is a huge advantage. Ugh, I am sighing along with everyone else out there. This SUCKS no matter what the details....

 

Wish me luck - and well, I will certainly be around.

 

Kristi

[EAMom]

BTW....you can get the throat cultures right away, while you are waiting to see specialists etc. That is something your family doctor can do.

Edited November 6, 2013 by EAMom

[EAMom]

Also, don't confuse Dr. Margo Thienemann (pediatric psych. in No. CA) with Dr. Trifiletti (pediatric neurologist in NJ). Usually when people say Dr. T. they mean Dr. Trifiletti.

 

Usually I refer to Dr. Thienemann as "Margo T." (easier to spell for one thing).

[T_Anna]

You can also go to an Urgent Care clinic. Our local office will prescribe antibiotics for literally anything, especially towards the weekend (Friday night, Saturday morning).

[Mayzoo]

My daughter's ASO (6) and anti-Dnase (86) are always low even when she was in the middle of a 60 day strep episode. Further investigation showed she is immune compromised, so she does not make antibodies the way she should.