ASO titers

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Hi everyone,

 

Had to share my news - as many of you know our son has PANDAS. He is doing really well on azithromycin and has been doing great since starting it at the end of August. He had his sudden onset at 6yrs of age -2 1/2 years ago. We have been testing his ASO titers periodically since that time - they have been up at 1200 in the past - then eventually came down to hover between 650 and 750 - last tested this summer they were in that range. We did start giving him the Vit A, D and E - as per the study Mustang Carole had posted (THANKS!)- not sure when that was - earlier in the year - we also started the azith - in the summer. We tested him last week - when he was symptomatic due to a viral illness - symptoms were minimal compared to our early days at this. Anyway - Just found out today his titers were at 412. This is the first significant drop we have seen for over probably a year and a half. Still nowhere near normal but heading that way. He has agreed to be re-tested this summer so we will see where he is then. I am thrilled - the doctor has always told me not to look at the numbers - but at his symptoms - but I still like to see something in black and white - showing an improvement - without a doubt he is a million times better than he was when we started this journey. Thanks to everyone here - this forum has been such a support to me over the years and I am so grateful to those who have helped me along the way. Time sure has passed quickly.

[Chemar]

what wonderful news Alison

 

I am so pleased for you and your son!

and thanks so much for sharing it here.

I know this will also be an encouragement for other parents dealing with PANDAS

[quan_daniel]

Congrats Alison,

Good to hear from you again.

Two quick questions.

 

What is the difference between Antistreptolysin O titer and Antideoxyribonuclease-B titer?

Why do normal people have this antibody Antistreptolysin even we have never had a strep infection for

a long period of time?

 

Thanks again.

Daniel

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Normal results

 

Antistreptolysin O titer:

 

* adult: 160 Todd units/ml

 

* child: six months to two years: 50 Todd units/ml; two to four years: 160 Todd units/ml; five to 12 years: 170-330 Todd units/ml

 

* newborn: similar to the mother's value

 

Antideoxyribonuclease-B titer:

 

* adult: 85 units

 

* child (preschool): 60 units

 

* child (school age): 170 units

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Daniel - this is from the PANDAS - NIMH website:

 

 

Q. What exactly is an anti-streptococcal antibody titer?

 

A. The anti-streptococcal antibody titer determines whether there is immunologic evidence of a previous strep. infection. Two different strep. tests are commercially available: the antistrepolysin O (ASO) titer, which rises 3-6 weeks after a strep. infection, and the antistreptococcal DNAase B (AntiDNAse- titer, which rises 6-8 weeks after a strep. infection.

 

Q. What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child?

 

A. An elevated anti-strep. titer (such as ASO or AntiDNAse- means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The height of the titer elevation doesn’t matter. Further, elevated titers are not a bad thing. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection.

 

Q. When is a strep. titer considered to be abnormal, or "elevated"?

 

A. The lab at NIH considers strep. titers between 0-400 to be normal. Other labs set the upper limit at 150 or 200. Since each lab measures titers in different ways, it is important to know the range used by the laboratory where the test was done – just ask where they draw the line between negative or positive titers.

 

It is important to note that some grade-school aged children have chronically "elevated" titers. These may actually be in the normal range for that child, as there is a lot of individual variability in titer values. Because of this variability, doctors will often draw a titer when the child is sick, or shortly thereafter, and then draw another titer several weeks later to see if the titer is "rising" – if so, this is strong evidence that the illness was due to strep. (Of course, a less expensive way to make this determination is to take a throat culture at the time that the child is ill.)

[quan_daniel]

Allison,

Thanks.

I guess my confusion was if you child's titer stays at 300 and would not go down anymore, then it is normal.

My thinking was depending how the test is performed, a value will always come back as long as over period

of time it is not rising, and decreasing in titer is okay.

 

So for a period of one year if a child's titer stays at 300 then that would be his normal range.

Then one can say a child is PANDA free?

 

 

Daniel

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I don't think you could say they were PANDAS free as another strep infection would cause the onset again. That is partly why the antibiotics are helpful, to prevent another infection. Also, with my son he has increases with viral illness' now (PITANDS) my feeling is that as the titers decrease - it has taken 2 1/2 years to go from 1200 to 400 with no known strep infection in that time - and ongoing antibitotics - that when his body is hit with an infection or something else to disrupt his immune system (foods/allergies) he now has less of the antibodies - which are the antibodies that attack the basal ganglia area of the brain causing the symptoms. So that could explain whey symptoms are decreasing as well even when sick with a viral illness - that there is less there to attack the brain. I am no scientist and so much of this goes over my head, but that is my basic thought on it - not sure how scientific - Also, different labs have different numbers for "normal" I believe ours says under 65. Doctors have not been able to explain the whole thing to me in terms of the titers because I think they just don't fully understand why they have remained so elevated. What I am writing is certainly not fact from anywhere other than just how I have processed the info - and it just seems to make sense to me. We have always been happy to see the numbers slowly come down - so we felt we were on the right track. This is the most significant drop we have seen for a long time. Usually it was down 20 or so or staying about the same. We used to test more frequently but my son is not a huge fan of needles so we are doing it every 6 months or so now.

 

From some literature it does talk about kids have chronically elevated titers - and that is normal for them. If there are no symptoms then it would be something many people wouldn't even know there kids had. We only tested the titers after the sudden onset.

[Claire]

So happy for you Alison!!

 

))

 

Claire