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Titers came back negative


laster99
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My son just got a blood draw on Monday and his dr. office called me yesterday to tell me that the "titers came back negative". I am unsure at this point how accurate that is. I was under the impression that you have to check titers when symptoms peak so as to catch them high and I told the dr. that. She acted like if he has EVER had the strep virus in his system that his titers would show something. I read that titers would be elevated for a few weeks or months after an exposure. Has anyone ever had an experience of negative titers and then gotten a second test during a sudden worsening of tics and found them elevated? Or should I give up on this route?

 

-Melissa

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No, it does not mean no pandas. There are many kids who do not mount high titers, even with documented strep. My two girls are two of them!

 

Hang in there and if you believe that it looks like pandas, keep searching. Find another doctor, get the Cunningham test, whatever you can do. The whole titer thing really does make it complicated!

 

Susan

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Oh my, Susan. This means more research for me! I am in the dark about the Cunningham test (though I just looked it up) as I haven't delved very far into the possibility of PANDAS. I finally just found a dr. who was willing to do the titer test.... only because I was adamant about it and she was quick to tell me how controvertial it was. I am really unsure about PANDAS and my son and I guess that's why I haven't pursued that route before. To make a long story short, he started with a "fake cough" at 2 years old, when I took him for a check-up at almost 5, the dr. asked me how long he'd had that tic. I was oblivious. He explained it to me, asked me to watch it, and over the next week he exploded with every classic tic. I was dumbfounded! I am wondering now..... what if he picked up strep at the dr. office? He's never officially had strep, but I have read enough to know that some people don't have the classic sore throat. Looks like I have more work ahead! Thanks for the info!

 

-Melissa

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Melissa,

 

Have you gone through the FA[Q in the helpful threads section or Buster's flow chart (also in the helpful threads)? These two documents will help you establish a path to follow. If I remember correctly, something like 37% of kids with PANDAS don't show high titers.

The other thing is that strep may not be the culprit. It could be some other infection that antibodies reacted to. (i.e mycoplasma pneumonia, Lyme). You need to go to a PANDAS literate doctor. Where are you located?

 

Kara

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Kara...he had pneumonia when he was 2 years old!!! It's hard for me to remember, but it was probably before he started his first "fake cough" symptom because he turned 2 at beginning of Nov. and he got pneumonia the day before Thanksgiving! I always associated the PANDAS with strep. I obviously have a lot to learn! I will definitely read those articles you mentioned. We are in TN. But we frequently travel to Arkansas with my husband on business. How can I find out if there is a dr who is knowledgeable in either of those states? Thanks for your help!

 

-Melissa

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My ds14 has never had a documented positive strep titer (although we only did the ASO unfortunately). Also, he has never had a positive throat culture. His presumed strep exposure probably occurred years before he finally "exploded" with PANDAS last January. I think other infections helped to further the development of PANDAS as well (mycoplasma and EV virus titers were positive). His Cunningham labs came back clearly positive for PANDAS. Don't be deterred by the negative titer! We lost 18 valuable months of treatment to a pediatric neurologist who said he did not know much about PANDAS but our son could not possibly have it because his ASO was negative. So sad...

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No. It doens't mean anything. I think almost 50% don't have high titers. And was it girls? that only 30% have titers? can't remember, but you can search Buster's last survey and find out.

 

There is alot on here about titers. or you can look at the www.pandasnetwork.com website for more information. Not all people get a raised titer after a strep infection. And, your child can react to exposure (won't raise a titer), not just infection. Plus certain kinds of strep only rasie AntiDnase B, not ASO...plus you have to get it done in the right window....plus your child may be int he "PITAND" phase - they react to viruses, not just strep (although may have an untreated strep infrection in there past that their body resolved on its own).

 

That's what our DS was - he reacts to viruses. He did not have raised titers, or a known strep infection. Although, after reading stuff for a year I remembered a weird rash he had weeks (maybe even a couple months) before his exacerbation, and the rash looked like what I now realize is peri-anal strep, which I treated at home with several applications of antibiotic ointment. It was mild, nothing I thought required a doctors visit.

 

 

By the time we took titers it was 9 months after that or so..whey would be back to normal...if they even rose in the first place, plus, perianal strep and impetigo are two types of strep that do not rasie ASO at all.

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Technically, if it is not strep that's the culprit, but some other infection, if is referred to as PITAND (pediatric infection triggered autoimmune disorder).

Your child should really be tested for other things besides strep - at a minimum for mycoplasma pneumonia to see if it's still there. You may want to have a complete immune workup done. When my daughter saw Dr. B. he ordered about 19 different tests on her to see how her immune system is working.

 

A few different ways to find a doctor.

 

Post the question on the board asking if anyone has found a helpful doctor in those areas.

 

Look at the helpful threads section at the top of the forum and review the one about doctors seen. You may find one it the TN AK area.

 

I have a list from March. There is one doctor on there from TN Daniel Kolb in Franklin. 615- 791-9784. You can try him, but the list is old and the newer one may or may not still have his name on it. You can get an updated list from www.pandasresourcenetwork.org.

 

In the end, though, you may want to figure out a way to see one of the top 4 PANDAS docs. Dr. B. in CT, Dr. T in NJ, Dr. L in MD or Dr. K in Chicago.

 

Kara

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Wow..thanks so much for all of the helpful info. My mind is blown right now trying to absorb it all and figure out what to do. But I am thankful to you guys that have experience to share so that it may speed up the process!

 

I will do lots of reading on here tonight! But could someone tell me if all these are treated the same? Whether it is PANDAS or PITAND... are antibiotics the usual treatment?

 

-Melissa

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I will do lots of reading on here tonight! But could someone tell me if all these are treated the same? Whether it is PANDAS or PITAND... are antibiotics the usual treatment?

 

-Melissa

 

In both PANDAS and PITANDs, the idea is to

1. Remove the underlying infection

2. Reduce inflammation to remove the breach in the blood brain barrier

3. Prevent recurring infection

 

Antibitics are used if the underlying infection is bacterial. The BEST antibiotic depends on the type of infection and on the child (all children are unique). Reducing iflammation can happen spontaneously once the infection is gone, or may need steroids or IVIG (and some kids need ongoing allergy treatments as well). Most people prevent recurring infection with some combination of prophylactic antibiotics, IVIG to boost immune system, natural remedies, and avoiding contaminants. The exact combination depends on the physician, the family, and the child.

 

Best of luck!

 

Ps - FYI we never had elevated strep titers either - just an elevated DNASE B which the pediatrican said meant that he had strep "some time" in his life... so it could not be PANDAS. At the time the peditrician said that my son had a huge infected cyst in his sinuses. It took a PANDAS doc to find it!

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