Another ASO titer question

[ajcire]

I just called the dr. for the results of my ds's bloodtest... it was 480. One of the dr's told me to have it run because if it was low he felt it wasn't pandas (insert eye roll here) but the dr. who was there when I did it (and who did my draw for the cunningham test) told me that it was really pointless to do it because my ds's titers should be high since he had known strep in Sept... he was on amox for a month and a half since the sept. strep... but has been off them now.

 

That said... what is considered normal aso? I thought most of you had more than one number but this was the only result they gave... I asked if that was it and the nurse said yes. I have no idea the purpose of the dr. who wanted me to do this really... no idea what info this was going to give him... the one who did the draw for it and gave me the results is not the one who ordered it and honestly, I don't feel like talking to the one who ordered it... just going to let this be.

[lismom]

I just called the dr. for the results of my ds's bloodtest... it was 480. One of the dr's told me to have it run because if it was low he felt it wasn't pandas (insert eye roll here) but the dr. who was there when I did it (and who did my draw for the cunningham test) told me that it was really pointless to do it because my ds's titers should be high since he had known strep in Sept... he was on amox for a month and a half since the sept. strep... but has been off them now.

 

That said... what is considered normal aso? I thought most of you had more than one number but this was the only result they gave... I asked if that was it and the nurse said yes. I have no idea the purpose of the dr. who wanted me to do this really... no idea what info this was going to give him... the one who did the draw for it and gave me the results is not the one who ordered it and honestly, I don't feel like talking to the one who ordered it... just going to let this be.

 

I am no expert but normal for my sons age is <150. So to me you are high still. With that said we got blood drawn after my son was sick for months with an undiagnosed strep infection and his titer was 605. Since then we have had it drawn and have not gone below 500. But I was told these can fluctuate and also may not return to normal for even up to a year after the initial strep infection.

If you saw results with antibiotics your first go round, demand them back. When my son was sick I went to alot of doctors, even a rheumatologist who believed in pandas and she told me that when the children she treats go under 500, she doesn't treat them with antibiotics anymore. I just looked at her in disbelief. On to the next doctor I thought.

It took us months and months on zithromax to get back to some normalcy. My son is still on it. Li'smom

[Buster]

I posted a bunch of stuff about ASO in this thread http://www.latitudes.org/forums/index.php?...art=#entry25312

 

The short summary is that ASO rises in only 53% of children with culturable throat GABHS (see Kaplan paper). GABHS that is on the skin does not have an ASO rise. So if the strep is skin strep or not in the thoat, you most likely will not get an ASO response.

 

Regards,

 

Buster

 

 

I just called the dr. for the results of my ds's bloodtest... it was 480. One of the dr's told me to have it run because if it was low he felt it wasn't pandas (insert eye roll here)

Uggh....

[smartyjones]

erica240 - i'd ask you to think about how much you like and are confident in that dr's office. i don't know why they would do the ASO if you have confirmed strep - sounds like a perfunctory, CYA move to me - but even that doesn't make sense. i believe it to be the first step in discovering if there's been a undetected strep infection. my son had no typical strep symptoms so for him it was helpful is seeing that he had indeed had strep recently. i know some have trouble with titers but for us it was helpful.

 

2 of our labs rate ASO over 150 as raised and one is over 200. our initial test was only ASO. subsequent ones have included anti-dnase-b also. i think if you do blood strep titers again, you should do both. also - you should get a copy of that lab work.

 

a behavioral therapist suggested pandas to me and told us to have ASO checked. he'd had no signs of strep. when it came back as 898, ped did a throat culture that was positive.

 

this was all early in my knowledge of pandas and i was shocked to have evidence of + strep. we'd been in the ped office at least 3 times that fall - ear ache, behavior, mouth rash - they were just looking at me, shrugging their shoulders and ushering me out as crazy mom. i now believe they did the culture as CYA b/c he'd been in that office so often and then had high titers. they then threw him on a perfunctory 5 day course of azith saying they were concerned he could get chorea. i knew from my research that he'd most likely had strep for at least a few weeks(i believe much longer) and that the short course of abx would likely not protect him from RF or SC b/c we were already over that window.

 

i left that office when we went back for the follow-up - which was silly in the first place b/c he'd had no signs of strep so i don't know what they were planning to look at to follow up - they said we didn't need to worry - yes the strep was gone (b/c of 5 days of azith) and "you'll find the strep and the behaviors are not related."

 

i was mad at myself for a long time b/c there had been many signs even before that fall that i needed to find a new ped. i just wasn't sure where to go and that somewhere else would be better. we did find a ped that is much, much better. he's still not sure what to do about pandas but he gives me credit for having a clue and agrees somethings not right.

[ajcire]

The dr. who actually did the blood draw is not the one who wanted me to get it. He did it just because he was doing the cunningham draw for me and the other dr. had told me to get the aso. The one who did the draw is the dr. in the practice who last year when I approached them about pandas, he told me he believed in it but it was out of his realm. He referred me to another dr in another practice that he knew treated it... I recently got notice that as of Nov. 1st that dr. no longer takes insurance. I can not see him anymore. The one who did the draw told me that there was no reason for the aso being he had a positive strep test in Sept... but I felt I should do it since the other dr. had told me to go for it... just in case I do need that dr. for anything, I wanted to have followed through since it seemed harmless and my son was having blood drawn anyway.

 

I thought I hit the jackpot when the one dr. I hadn't asked in my regular ped office of 5 dr's told me sure, I have some patientswith this.. he did acknowledge he doesn't know a lot about it but that he has found amox to work... I guess the few kids he has treated responded to amox so when I told him that I wasn't sure my son was fully responding to the amox he told me that maybe it wasn't pandas and that there was no reason to keep putting him on antibiotics if there was no strep. Yes... banging head here. As soon as he told me to get the ASO I knew he was not going to be my answer but right now I need to hang out with this.

 

I guess I am full of my own doubts (because I have a husband who was with me the first time a dr. there told me I was crazy that this is not real and if it was my son definitely doesn't have it and he never went back with me to hear the dr. I can't go to anymore say that yes indeed this sure looks like Pandas to him).... I am hesitant to keep pushing for things when I no longer know what the heck I am pushing for. My son is at a good place right now and always presented with it mildly compared to how many other children present with Pandas... it is easy to ignore it in my house but I know from seeing all your stories that this is NOT something I want to ignore.. I don't know if this is making sense or if I am just sounding crazy now. I am hoping that the results from the cunningham study give me the push to believe in myself with all this.

 

My son also has never had typical strep symptoms of sore throat/fever but gets the positive cultures. That has been the piece that makes me not feel crazy... that I can tell when to have him checked based on behavior and he tests positive.

 

 

 

erica240 - i'd ask you to think about how much you like and are confident in that dr's office.

[Buster]

My son also has never had typical strep symptoms of sore throat/fever but gets the positive cultures. That has been the piece that makes me not feel crazy... that I can tell when to have him checked based on behavior and he tests positive.

 

Quoting from the NIMH website:

Q. What are the diagnostic criteria for PANDAS?

 

A. They are:

1. Presence of Obsessive-compulsive disorder and/or a tic disorder
   
2. Pediatric onset of symptoms (age 3 years to puberty)
   
3. Episodic course of symptom severity
   
4. Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.)
   
5. Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)
   

A positive throat culture is all that is necessary. ASO and anti-DNAse tests should be used only if you missed the throat (or skin) culture.

 

Have you been able to clear your son with antibiotics (i.e., a negative throat culture 2 weeks post treatment with antibiotics)?

 

Buster

[ajcire]

Have you been able to clear your son with antibiotics (i.e., a negative throat culture 2 weeks post treatment with antibiotics)?

 

Buster

 

 

Yes... he has had a negative throat culture since then.... after the positive culture in sept he was on amox for 10 days and then we kept him on for an additional month. My non pandas daughter had strep again this past week and I had my son cultured again and it was negative... I only had him cultured because she was positive... not because I actually thought he had strep this time.. it was just to be sure. The antibiotics really seemed to help last year when he was put on it at the time we had more significant symptoms. That dr. who treated him then had him on zithromyacin.

 

I guess I just keep questioning based on the mildness of my ds... BUT like I said, how can I explain that I can tell when he has strep when he has no other symptoms other than a throat clearing tic and behaviorial differences if I am wrong about this being pandas... Last year when I first pieced it together (the first year he had strep, that everyone in my house had it) we had the frequent urination (not accidents but going enough that his teacher noticed it was excessive too), throat clearing tic (we had eye blinking at the age of 2 that is for the most part gone), hoarding of garbage (I was so clueless that I thought this was almost comical when it was going on and it disappeared almost as suddenly as it started) sudden onset anxiety about sleeping alone, way to quick to react to things, irrational, really just mean to his sister (a different kind than just regular sibling stuff).... but much of this is gone now with just lingering stuff (like the throat clearing) and because it's so mild it's just so easy for everyone to blow off as nothing. I think I am just trying to talk myself into that I am not crazy, this is real.

[Buster]

but much of this is gone now with just lingering stuff (like the throat clearing) and because it's so mild it's just so easy for everyone to blow off as nothing. I think I am just trying to talk myself into that I am not crazy, this is real.

 

I totally agree with you. When dd9 was at her worst, there was no way anyone could ignore it -- screaming psychotic suicidal statements right in the middle of the doctor's office. Horrible contamination fears with occular migraines and hallucinations (seeing ghosts). Okay that was really, really scary -- that was the peak.

 

If we had only seen the minor vocal tic, movement disorder/hand tremor, deteriorating handwriting, defiant/compulsive behavior that we saw when on prophylaxic antibiotic (i.e., when she was 70% better), we probably would have thought it was "our version of normal kids -- kids get tics and stuff."

 

By seeing the extreme and making daily logs, we could totally see the pattern. When dd9 was in an exacerbation (i.e., > 3 days), we would bring in dd6 (her sister) and her sister would be positive for GABHS (4 out of 5 times this past year -- and on the 5th one we think it was a bad throat swab ). Anyway, we definitely had a canary for GABHS in the house. We did culture her sister 3 weeks post treatment to ensure that she actually cleared. What a year....

 

 

In our case, we can totally say that there is a before IVIG an after IVIG child. We can absolutely say there is a correlation between GABHS in the home and exacerbations. We can absolutely say that we understand why if they had this in the 1800's they'd think the child was possessed. There is nothing benign about PANDAS.

 

Regards,

 

Buster