AntiDNAase B titer

[P_Mom]

Hi all,

I was just reading through some posts and came across a few that stated PANDAS was ruled out because their childs ASO titer was normal. I am just writing because I have learned the ASO titer can become normal fairly rapidly after strep is cleared, but the AntiDNAase B titer may remain elevated for quite some time. I would definitely recommend everyone who suspects PANDAS to make sure BOTH titers are run, not just ASO. Also keep in mind other illness, virus can cause PANDAS (PITANDS), so, blood titers are not always reliable in a diagnosis. Watch for sudden, explosive onset related to illness. PANDAS is Strep , PITANDS is viral, etc. I just worry that docs, people will rule out a PANDAS situation because of blood titers, I was told by NIMH that blood titers are not a reliable diagnosis for PANDAS. You know, I know this is all so confusing and difficult to determine what is what, I have a hard time too. It really helps to share stories, I have learned so much and have gotten good suggestions and advice, Thank you to ALL.

Kelly

[Chemar]

Thanks Kelly

 

yes, I think you will find most people have had the dual titres run, and hopefully those docs who know about PANDAS would know that...but it is a good reminder for anyone who may not have known about the importance of having both done.

 

we have some threads here on PITANDS too, tho far less info is generally available on the theory

 

so many of our kids, even those who dont have PANDAS dx, do seem to be triggered so by illness and infection, and we also have the indications of the fungal Candida connection in triggering tics, OCD, "brain fog" and all that stuff, that I do feel there is validity of the concept of microbes impacting our neurologically suceptible kids.

 

Cheri

[faith]

yes, I'm one of them that has had normal titers, and we have had both aso and d-nase. I also believe that everyone should watch for symptoms due to any illness, especially strep regardless of being PANDAS or not.

 

I have to ask this tho, -- those of you who have seen the specialists on PANDAS (Swedo, Murphy, etc.), have they explained wether or not the tics in kids with the PANDAS connection are a "separate" issue from tics or ts? I mean if it were not for the strep and symptoms associated, would the child have some tics or ts or ocd anyway, just not to the degree of the PANDAS kids? I'm just wondering if it is more complicated in the PANDAS associated, for the autoimmune response just makes it more pronounced, and thus harder to eradicate because of the on and off of antibiotics, sort of like a vicious cycle? Sometimes I find it hard to understand that this response would cause tics or any symptom that was never an issue before. I just have this feeling that the fact that antibiotics can diminish the symptoms, and the "why" of that should provide some clue to how tics/ts can be managed even in the non-PANDAS group..........does that make any sense? ............ Kim?

 

Faith

[LisaM]

Yes Michelle, thanks for that reminder. I did not know anything about anything when my daughter presented with tics when her brother had strep and the doc we went to did run an ASO titer at the time. It came back less than 200 and they dismissed strep as a possibility entirely. Interestingly, I just had both ASO and DNase run on both my kids and hers came back less than 100 this time. So why was it higher the first time? Perhaps it was just starting to rise??? Had I known then what I know now I would have had them run the ASO and DNAse again 2 or 3 weeks later. And I would have put her on antibiotics no matter what the result said because her brother had strep! I am trying to learn more about these titers and when they rise and when they fall. From what I understand the ASO rises about 2 weeks after the initial infection, and the DNAse rises 4 to 6 weeks after. Also, I believe the key is to have multiple titers run to follow it accurately.

 

While on the subject of strep, I thought I would mention the fact that my daughter has had strep B in the past (with a very sore throat) and the doctor we had at that time did put her on an antibiotic. Some doctors do not treat anything other than strep A. Some doctors don't send their cultures to a lab, they culture it themselves and they do not test for anything other than strep A because strep A is the one known to cause rheumatic fever.

 

I believe PANDAS and PITANDS kids would benefit from being diagnosed with ALL streps and treatment for them should be seriously considered.

 

My daughter had a very bad sore throat once and it was cultured only for strep A and was not treated and 10 days later she came down with very severe separation anxiety to the point that she would not go to school at all. This was all before I was considering PANDAS or PITANDS for her.

[michele]

LISA,

I know from Dr. Murphy's visit that she did not want me to focus so much on runnning tests and seeing Dr.'s as documenting episodes and keeping records. Don't get so hung up on the titers. The five criteria in this article need to be present for a diagnosis of PANDAS. http://stepoutofthesilence.org/blogs/featu.../15/pandas.aspx

This is a recent article Sept 2007. It is the symptoms that follow strep infections that help define PANDAS. I don't think the articles use elevated titers as a diagnostic tool. Also the term PITANDS is an old term. Look at the dates on the articles discussing PITANDS. They are usually dated in the late 90's. I have been told it is not currently used or diagnosed as a disorder. I think it fits under the umbrella of PANDAS. I know my son gets symptoms from viral illnesses too. Whenever his immune system is taxed. They just call it PANDAS. I think repeat episodes is the key. Also the extreme OCD and anxiety that comes on and the tics and neurological problems that come along with them. It is very saw toothed in that it gets rapidly worse then kind of better with a little time then rapidly worse again with the next exposure. Just when you think they are kind of getting better it hits again and boom all the symptoms come back overnight. I know in our case we have all five of the criteria. Also fine motor delays are often present.

http://www.childadvocate.net/PANDAS_treatment.htm Here is another article that gets more in depth with treatments. It says it was revised in July 2007.

 

Michele

 

Yes Michelle, thanks for that reminder. I did not know anything about anything when my daughter presented with tics when her brother had strep and the doc we went to did run an ASO titer at the time. It came back less than 200 and they dismissed strep as a possibility entirely. Interestingly, I just had both ASO and DNase run on both my kids and hers came back less than 100 this time. So why was it higher the first time? Perhaps it was just starting to rise??? Had I known then what I know now I would have had them run the ASO and DNAse again 2 or 3 weeks later. And I would have put her on antibiotics no matter what the result said because her brother had strep! I am trying to learn more about these titers and when they rise and when they fall. From what I understand the ASO rises about 2 weeks after the initial infection, and the DNAse rises 4 to 6 weeks after. Also, I believe the key is to have multiple titers run to follow it accurately.

 

While on the subject of strep, I thought I would mention the fact that my daughter has had strep B in the past (with a very sore throat) and the doctor we had at that time did put her on an antibiotic. Some doctors do not treat anything other than strep A. Some doctors don't send their cultures to a lab, they culture it themselves and they do not test for anything other than strep A because strep A is the one known to cause rheumatic fever.

 

I believe PANDAS and PITANDS kids would benefit from being diagnosed with ALL streps and treatment for them should be seriously considered.

 

My daughter had a very bad sore throat once and it was cultured only for strep A and was not treated and 10 days later she came down with very severe separation anxiety to the point that she would not go to school at all. This was all before I was considering PANDAS or PITANDS for her.