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can blood titers come back negative?


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Any info. would be greatly appreciated. thank you!!!!

 

My 6yo daughter was very sick about 10 weeks ago. (no sore throat). 2 weeks later, severe separation anxiety showed up. This is a little girl who LOVED going to kindergarten, who now screamed everytime i put her on the bus, didn't wnat to be left alone, even at birthday parties anymore!!!. she said nothing happened at school, just that she didn't wnat to leave her mommy (me). About 4 weeks later, eye-blinking started. So, now she has these winking/blinking things, and a pedi opthomogist friend suggested PANDAS. all of her blood tests came back negative (throat culture- rapid and 48-72 hr.), ASO and DNA-ase titers. all negative. Guys, i REALLY think that the sickness has to do with the tics and separation anxiety. Is it possible to have negative results AND still have PANDAS?

 

These are her blood titer results:

 

ASO: <6 (normal is <150)

DNA-ase: 60 (normal values are <60 preschool; <150 school; <85 adult)

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Any info. would be greatly appreciated. thank you!!!!

 

My 6yo daughter was very sick about 10 weeks ago. (no sore throat). 2 weeks later, severe separation anxiety showed up. This is a little girl who LOVED going to kindergarten, who now screamed everytime i put her on the bus, didn't wnat to be left alone, even at birthday parties anymore!!!. she said nothing happened at school, just that she didn't wnat to leave her mommy (me). About 4 weeks later, eye-blinking started. So, now she has these winking/blinking things, and a pedi opthomogist friend suggested PANDAS. all of her blood tests came back negative (throat culture- rapid and 48-72 hr.), ASO and DNA-ase titers. all negative. Guys, i REALLY think that the sickness has to do with the tics and separation anxiety. Is it possible to have negative results AND still have PANDAS?

 

These are her blood titer results:

 

ASO: <6 (normal is <150)

DNA-ase: 60 (normal values are <60 preschool; <150 school; <85 adult)

 

 

I'm sorry that you have to go through this too...My DD started having symptoms in April, so I am new to the whole PANDAS disorder, but From what I understand, yes you can have a low titer count, and a negative culture, and still have PANDAS. Many of the parents on this forum have said that their children's titer counts were normal...as for the negative culture...strep can be in the throat, sinuses, skin, gut, and some other...not really sure.

 

Check out Diana Polhman's website, www.pandasnetwork.org I think it addresses these issues.

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To add to Kayanne's list, it can be found in the vaginal area as well.

 

Your daughter sounds very similar to mine. She just turned 7. While she never really liked school, she would always go willing. But she also stopped going to birthday parties and other activities with her friends. She didn't want to leave us. Her behaviors flare up not only when she has a strep infection but when she has a UTI or catchs a virus. She also no longer has "normal" symptoms when she is exposed to strep.

 

I wouldn't base your conclusion on whether or not she has Pandas on the blood results. Has she had any antibiotics recently and have you seen an improvement in her behavior while taking them? IMO that is a better indicator than the blood results.

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I wouldn't base your conclusion on whether or not she has Pandas on the blood results. Has she had any antibiotics recently and have you seen an improvement in her behavior while taking them? IMO that is a better indicator than the blood results.

 

 

I am so sorry your d is experiencing this--

 

I wanted to agree with ShaesMom that the "diagnosis" of this is not clear cut, but certainly if treatment with antibiotics makes a difference in her behavior that was an indication in our case...

Our daughter has never had positive bloodwork or a pos. strep test since we have been testing her---I suspect she had an undetected strep episode, earlier in the year, and then every illness/sinus cold triggers it--when she is not on antibiotics.

Take care--

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Hi,

I was also wondering this. My son tics started when he was three and a half. When I took him too the doctor they said he had swollen neck glands but they never did a strep test. Now I think about this it makes me very angry!!! He seems to get strep once a year now. He is 8 years old and has tics. I have read Pandas kids handwriting gets worse and it seems my sons handwriting gets worse every year. I got a blood strep test done a couple of months ago and it was normal. So here I am trying to decide if it just tics or Pandas?? This is all so frustrating for me. I have tried to get doctors to prescribe stronger antibiotics for a longer period of time, to see if it helps but they will not. So here I am wondering....Any thoughts??? Thanks Char...

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what is the protocol for PANDAS re: antibiotics? i bet if i caused enough stink, my pedi would give me the antibiotics, especially since i'm holistic, neve take my kds to doctors, unless absolutely necessary, adn NEVER give them antibiotics, unless absoltuely necessary. so my pedi KNOWS that i'm not just trying to push the antibiotics, yk? is the protocol really rigorous, or just a regular course of antibiotics? (and no, she has not been on antibiotics since last year.)

 

oh, one more question. if the blood titers and strep test all come back negative, then how do you know it's PANDAS, and not some other thing? (i'm off to look at that website now. thanks, kayanne!)

 

btw, thank you so much for answering my post. i'm so lost and feel so helpless. i look at my beautiful little girl and just cry b/c she's obviously suffereing, and i cannot help her. i will do everything in my power to figure this out for her. thanks guys!

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what is the protocol for PANDAS re: antibiotics? i bet if i caused enough stink, my pedi would give me the antibiotics, especially since i'm holistic, neve take my kds to doctors, unless absolutely necessary, adn NEVER give them antibiotics, unless absoltuely necessary. so my pedi KNOWS that i'm not just trying to push the antibiotics, yk? is the protocol really rigorous, or just a regular course of antibiotics? (and no, she has not been on antibiotics since last year.)

 

oh, one more question. if the blood titers and strep test all come back negative, then how do you know it's PANDAS, and not some other thing? (i'm off to look at that website now. thanks, kayanne!)

 

btw, thank you so much for answering my post. i'm so lost and feel so helpless. i look at my beautiful little girl and just cry b/c she's obviously suffereing, and i cannot help her. i will do everything in my power to figure this out for her. thanks guys!

In my daughter's case she did have tons of +strep tests, but titers were either normal or low. Most specialists wrote her off as a benign carrier. But her pediatrician knew that behaviors were correlated with +strep tests and, most importantly, antibiotics improved behavior...always, and they did a better job of improving behavior than psych meds. So, if the infection is undetectable, I'm thinking a trial with prophylactic antibiotics may demonstrate or rule out a PANDAS connection. Just my thoughts...

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It would be nice if you could get her started on a thirty day dose of either augmentin, azithrymycin, or omnicef. But even a 10 day dose is better than nothing. We saw an improvement in less than 24 hours when she started augmentin especially in relation to her separation anxiety. Also, her overall energy level improved which was down to zero. She is currently on prophylatic erithimycin (I still haven't figured out how to spell it).

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wow. ok. thanks guys! i called her pedi who said that she's going to review her file and discuss it with her collegues, and then get back to me on tuesday. at first she didn't agree with me, but after i talked to her about the whole thing, she absolutely agreed with me. i said "what's the worst thing that can happen if we do the round of antibiotics?" and she agreed. YEAH!

 

i'll update after we start the antibiotics. in the meantime, if anyone has anything else to add, i'd appreciate it! thanks!

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thanks for the article link--I have read before but liked reading again everytime I read it I learn something else, so thanks and hope everyone has a good weekend.

 

Deanna

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Guest asaxon
Any info. would be greatly appreciated. thank you!!!!

 

My 6yo daughter was very sick about 10 weeks ago. (no sore throat). 2 weeks later, severe separation anxiety showed up. This is a little girl who LOVED going to kindergarten, who now screamed everytime i put her on the bus, didn't wnat to be left alone, even at birthday parties anymore!!!. she said nothing happened at school, just that she didn't wnat to leave her mommy (me). About 4 weeks later, eye-blinking started. So, now she has these winking/blinking things, and a pedi opthomogist friend suggested PANDAS. all of her blood tests came back negative (throat culture- rapid and 48-72 hr.), ASO and DNA-ase titers. all negative. Guys, i REALLY think that the sickness has to do with the tics and separation anxiety. Is it possible to have negative results AND still have PANDAS?

 

These are her blood titer results:

 

ASO: <6 (normal is <150)

DNA-ase: 60 (normal values are <60 preschool; <150 school; <85 adult)

 

Absolutely yes, because positive ASO and/or Anti-DNA-ase-B titers show that there has been a recent strep infection, but negative ASO and/or Anti-DNA-ase-B titers show nothing.

 

It is *not* the ASO or Anti-DNAase-B antibodies that are suspected of causing PANDAS. To assemble their group of research subjects, the early PANDAS researchers (Swedo et al) used ASO and/or Anti-DNA-ase-B titers as indicators of a recent strep infection where there was not a positive throat culture. But, as I understand it, you can get strep, not get tested or treated with antibiotics, generate an immune response that kills the infection (after which you would expect a negative throat culture), and then *still* test negative for both the throat culture and the two titers. See Shet A, Kaplan EL, Johnson DR, Cleary PP, "Immune Response to Group A Streptococcal C5a Peptidase in Children: Implications for Vaccine Development," 188(6) Journal of Infectious Diseases (2003), pp. 809-17 (PMID: 12964111). In that study, unrelated to PANDAS, researchers noted a 37% false-negative rate in combined ASO and Anti-DNAase-B titers four weeks after a positive throat culture for strep.

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