Increasing ASO & Anti DNase-B in sibling who is asymptomatic

[worriedmommy]

My PANDAS child is my dd, age 6. She sees Dr. B who feels that it is important to clear all family members of strep.

 

My ds, age 4, has had numerous cases of strep in the past (dating back to 18 months old). He NEVER gets a sore throat, but does sometimes get a scarlet fever rash. Since April 2010, he has had 3 sets of ASO/Anti DNase-B tests. He's had 3-4 separate throat swabs during this time, but all were negative for strep. This being said, he's had enlarged red tonsils, what I believe to be a scarlet fever rash on his trunk, swolen lymph nodes in his groin and armpits (enough to cause him pain), and lots of sinus/allergy issues. His results were as follows on 4/28/10, 6/5/10 & 8/2/10:

 

ASO = 369, 302*, 362 (Normal range for his age is 0-70)

Anti DNase-B = 346, 353*, 405 (Normal range for his age is 0-250)

 

* I should note that he was treated with Azith and Bactrim after this between the 1st & 2nd blood draw, which may account for the ASO dropping. However, I'm not sure what to make of the increase. My thought is that he has an active infection

 

Also, his Mycoplasma IgM has been high all 3 times at 1.46, 1.26, 1.48. Mycoplasma IgG has been normal all 3 times.

 

Anyone have experience with treating siblings of PANDAS kids when throat cultures are negative and no fever. The pediatrician doesn't really know what to do at this point. Ds is not a patient of Dr. B, and since he is "out of network" for our HMO it's expensive to go to him.

 

Thanks.

[Worried_Dad]

Our whole family was elevated on ASO - I came in at 443 last test, our youngest was 597. None of us has ever had a positive throat culture over past 3 years, and no overt symptoms of strep throat.

 

I was put on a month of zithromax after initial elevated ASO (303) in March (but low dose - 250 mg daily). In June, when I re-tested, expecting that it would have declined, it had risen to 443. I was then prescribed a month of clindamycin (along with the rest of our family) to try to clear everyone at the same time.

 

We're still waiting to re-test after the clindamycin. I'll let you know how it turns out for our 2 non-PANDAS boys (ages 4 and 10).

 

P.S.: our local docs are baffled as well. Say they've "never seen anything like this" with entire family having elevated strep titers but no clear symptoms. Guess they should meet more of us wacky PANDAS clans, eh?

[worriedmommy]

Our whole family was elevated on ASO - I came in at 443 last test, our youngest was 597. None of us has ever had a positive throat culture over past 3 years, and no overt symptoms of strep throat.

 

I was put on a month of zithromax after initial elevated ASO (303) in March (but low dose - 250 mg daily). In June, when I re-tested, expecting that it would have declined, it had risen to 443. I was then prescribed a month of clindamycin (along with the rest of our family) to try to clear everyone at the same time.

 

We're still waiting to re-test after the clindamycin. I'll let you know how it turns out for our 2 non-PANDAS boys (ages 4 and 10).

 

P.S.: our local docs are baffled as well. Say they've "never seen anything like this" with entire family having elevated strep titers but no clear symptoms. Guess they should meet more of us wacky PANDAS clans, eh?

 

Thanks. I'm concerned b/c Dr. B is recommending IVIG for my PANDAS child. I'm not sure if my son's titers will affect the timing of that, as I don't want to go through with IVIG if dd is simply going to be exposed to strep by ds right away.

 

At the same time, I'm now thinking that dd's backslide that began in mid June, and took a further dive in July may be realted to ds's increase in titers?? Just a hunch.

[EAMom]

I would try a month of full strength Azith. Clindamycin (like WD used) is another good ab, but it does taste really bad (I'm assuming your 6 year old doesn't swallow pills yet), so I would try Azith. first.

 

If the antibiotics don't help, I'm also wondering about getting your 6 year old's tonsils out, if they could be the source of infection. Here is a post that I thought was interesting...tonsils remained infected even after months of antibiotics. http://www.latitudes.org/forums/index.php?showtopic=9372

 

Alternatively, if he's had sinus issues, it's possible strep is hiding in his sinuses.

Edited August 13, 2010 by EAMom

[worriedmommy]

I'm bumping this in case anyone has any additional advice.

 

I posted this on 8/13 regarding my non PANDAS (but that I sometimes question PANDAS) 4 year old son whose mycoplasma IgM, ASO & Anti DNase-B all came back high. I still haven't gotten any advice from the pediatrician regarding treatment, so I'm bringing him in tomorrow to demand something be done. Does a month of Azith seem like the right thing...or is something like Biaxin a better bet?

 

I'm really concerned b/c while he's not showing full blown mycoplasma or strep throat symptoms...something is really off with him. The past month he's been extremely tired, very congested, dry hacking cough, a rash on his torso that's come and gone, his cheeks were extremely flushed/sunburned looking much of July & Aug (although he was NOT sunburned), and he has a swollen lymph node in his groin (seen on ultrasound) that has caused him to limp from time to time. He had a negative throat culture in July...yet his ASO & Anti DNase-B rose since June. My fear is not only that he is exposing my PANDAS 6 year old to infection, but also that something is really amiss with him. During this time, his behavior has been terrible...lots of anger, screaming, comments about his brain, and struggling to find words when he speaks.

 

ANY suggestions for me going into this doctors visit would be greatly appreciated.

[matis_mom]

I'm bumping this in case anyone has any additional advice.

 

I posted this on 8/13 regarding my non PANDAS (but that I sometimes question PANDAS) 4 year old son whose mycoplasma IgM, ASO & Anti DNase-B all came back high. I still haven't gotten any advice from the pediatrician regarding treatment, so I'm bringing him in tomorrow to demand something be done. Does a month of Azith seem like the right thing...or is something like Biaxin a better bet?

 

I'm really concerned b/c while he's not showing full blown mycoplasma or strep throat symptoms...something is really off with him. The past month he's been extremely tired, very congested, dry hacking cough, a rash on his torso that's come and gone, his cheeks were extremely flushed/sunburned looking much of July & Aug (although he was NOT sunburned), and he has a swollen lymph node in his groin (seen on ultrasound) that has caused him to limp from time to time. He had a negative throat culture in July...yet his ASO & Anti DNase-B rose since June. My fear is not only that he is exposing my PANDAS 6 year old to infection, but also that something is really amiss with him. During this time, his behavior has been terrible...lots of anger, screaming, comments about his brain, and struggling to find words when he speaks.

 

ANY suggestions for me going into this doctors visit would be greatly appreciated.

I don't have any suggestions except that you call now to make an appointment with Dr. B for your younger son. Hopefully your pediatrician will do something (I think most pediatricians will rather prescribe that face the wrath of a worried mother), but just in case, it's good to make an appointment now since usually it takes weeks to get in to a PANDAS specialist. Let us know how it goes.