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Elevated ASO titer in mom of four PANDAS children


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We recently did a boat load of lab work (per Dr. T) on my four children and also ASO, ADB, and streptozyme on me. So far just a few results have returned (ASO). The ASO is normal in all of my children but mine is 396. The lab that did the test has 0-200 as the normal. With mine being 396, I think I need to be treated, but I am looking for input from all of you!

TIA!

Colleen

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Well, I think it could be elevated due to exposure from your kids- but I'd treat anyway- better safe than sorry, and the treatment is pretty low risk. I see no downside to treating, and no upside to not treating.

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I second the motion... and treat it aggressively. I tested with an ASO of 303 in March, so the doc put me on a month of zithromax but low dose (250 mg daily). I waited 2 months after the end of the zith - per Dr. K recommendation - and had titers redone. My ASO had risen to 443! It's hard for me to believe that this upward trend is benign, and I've been fighting serious sinus congestion for quite some time.

 

So I begged our family doc to prescribe a month of "eradication dose" of clindamycin. The rest of our family had already started this, because all of our ASO titers were elevated. I won't feel comfortable until we see a trend in the right direction and all of our ASO levels are at least moving downward. In an e-mail, Dr. K echoed this caution: he said we "absolutely could not risk another strep infection" for our PANDAS son.

 

Why take a chance? Elevated ASO at least indicates the possibility of a current strep infection, and with vulnerable PANDAS kids in the house, better safe than sorry!!!

 

 

Well, I think it could be elevated due to exposure from your kids- but I'd treat anyway- better safe than sorry, and the treatment is pretty low risk. I see no downside to treating, and no upside to not treating.
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I just spoke with Dr. K about this very topic on Wednesday.

 

I believe that he has seen enough of a trend that he now feels its important to follow/treat the ASO TITERS to sub negative levels. My husband's ASO was 283 and Anti-DNase-B was 680. He was on 40 days of Augmentin XR and we retested him and his ASO was 244 and Anti-DNase-B was still 680. We continue to treat him with antibiotics and have just rotated him to Omicef/Ripfampin combo and will recheck titers towards the end of July. Dr. K did state it could take a very long time to see the Anti-DNase-B resolve and to focus on the ASO.

 

-Wendy

Edited by SF Mom
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Thanks for the replies. I am going to call my dr this morning and ask her to treat me b/c of my ASO being 396. I am wondering if I should be treated with zithromax or augmentin. Any thoughts?

Colleen

Edited by colleenrn
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Colleen,

 

Hi! I was curious if you had/have any symptoms at all? I know WorriedDad referred to ongoing sinus issues, but did you have any indications of an ongoing infection?

 

I know there is another thread about a walk-in lab, but I didn't see strep titers on their list of services.

 

Ugh, where does this all end???

 

Best wishes,

Jill

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As far as symptoms, I don't have any typical strep symptoms (no sore throat etc..), but I have been very tired and have had some skin problems that i wonder if it could be related to strep or be strep. For example, recently any cut I get or little pimple, seems to get infected. My oldest child has had a big flareup of PANDAS symptoms lately and I attributed it to the strep she was exposed to a ferw weeks ago when she was around her cousins who were being treated for strep, but maybe it is from me... I feel terrible that i could be causing this in my daughter.

My daughter is almost 14 and has been doing really well now for the past year and a half on daily Zithromax. Now she is having what seems to be panic attacks at bedtime. He pulse satrts to race very fast, she gets very scared/nervous/crying. This occured for a few weeks 5 years ago and never again until this past week.

 

So frustrating and heartbreaking.

Colleen

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I left my NP a message at 8 this morning as soon as they opened, asking her for a high dose of Zithromax (750mg) for a month. They called back an hour later saying they had already faxed it to the pharmacy! ! I guess I will take it for a month and then see about getting the ASO redone. I also am awaiting my anti dnase B and streptozyme, and mycoplasma results. Can't wait to see what those are...

Colleen

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That should definitely help!!!!!!! BUT, if the titers seem to be stubborn then definitely try Omnicef 300 m.g./Ripfampin 600 m.g. combo. Focus on ASO resolution as I understand Anti-DNase-B can take time.

Edited by SF Mom
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I just spoke with Dr. K about this very topic on Wednesday.

 

I believe that he has seen enough of a trend that he now feels its important to follow/treat the ASO TITERS to sub negative levels. My husband's ASO was 283 and Anti-DNase-B was 680. He was on 40 days of Augmentin XR and we retested him and his ASO was 244 and Anti-DNase-B was still 680. We continue to treat him with antibiotics and have just rotated him to Omicef/Ripfampin combo and will recheck titers towards the end of July. Dr. K did state it could take a very long time to see the Anti-DNase-B resolve and to focus on the ASO.

 

-Wendy

Wendy,

Did Dr. K. prescribe for you guys or did you have to go through your own docs? Our docs here are not getting the picture and I feel like we are running out of options...

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Dr. K does not prescribe for family members or typically aggressive antibiotic protocol. Initially, we went through a treating psychiatrist here who has many PANDAS patients..... but its getting a little beyond her expertise but encourages to SOLVE the problem. We are now pursuing a Lyme literate Dr. here locally. Lyme Dr.'s are very versed in the long term multiple use of antibiotics.

 

-Wendy

Edited by SF Mom
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We were just in for ivig over 2 weeks ago. He never mentioned anything about family carriers. Are we suppose to figure this out? My aso's and DNase is fine. MycoP was elevated due to upper resp infection. Dh has the elevated DNase but ds never had elevated DNase, only aso's. R we only worried about aso's?

Ugh! Mass confusion here!

 

 

I just spoke with Dr. K about this very topic on Wednesday.

 

I believe that he has seen enough of a trend that he now feels its important to follow/treat the ASO TITERS to sub negative levels. My husband's ASO was 283 and Anti-DNase-B was 680. He was on 40 days of Augmentin XR and we retested him and his ASO was 244 and Anti-DNase-B was still 680. We continue to treat him with antibiotics and have just rotated him to Omicef/Ripfampin combo and will recheck titers towards the end of July. Dr. K did state it could take a very long time to see the Anti-DNase-B resolve and to focus on the ASO.

 

-Wendy

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This is something he is just noticing a trend in families. We investigated titers on our own initially and I've been reporting back to him. My husband had some unexplained GI issues as well as prostrate pain. My father-in-law is also a Urologist and we heard too many horror stories about what strep can do to the testicles. Madeleine Cunningham felt my husband had shared the illness with our 3 children, etc. We opted to treat and ASO came down indicative of an active infection. He definitely said to focus on ASO being sub negative.

 

-Wendy

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