Blood Work - Even more confused...

[momtocole1]

We had my sons blood work done for the first time. He was showing all signs of strep throat last week. Culture was negative because he was on Zith. He was on Zith for a couple of months and he was doing well. I took him off Zith because I read too many negative things about prohylactic antibiotics and got scared. A few weeks later he completely decompensated. He had no signs of strep, no sore throat. I was trying to treat his OCD with CBT and ERP. Huge mistake he just got worse. I put him back on Zith and he did not seem to get much better, only small improvements. I think he developed an immunity to the Zith and that is why he got the strep again.

 

The doctor who is not very familiar with how to treat pandas agreed to put him on Augmentin 6 days ago, 600 mg two times per day.

 

The ASO sereology test came back negative.

 

AntiDnase B results won't be back for 10 days.

 

My doc thinks that we should just go by the clinical signs that he has PANDAS. He literally meets all the criteria.

 

Does anyone think that ASO was negative because he is on such a high dose of Augmentin?

 

Or is it too close to his strep coming on for those antibodies to show up?

 

I am trying to find a doctor in socal that has succesfully treated kids with PANDAS.

 

I have been emailing Beth Maloney who wrote saving Sammy. She has received thousands of emails from around the country and she is comprising a list of doctors, but she does not have anyone for socal yet.

 

My son seems to be doing slightly better on Augmentin, tics are changing and he doing less retracing.

 

I am just worn out and confused.

 

Thank you,

[peglem]

My doc thinks that we should just go by the clinical signs that he has PANDAS. He literally meets all the criteria.

 

I agree with your doctor! Many of our children come up negative for ASO and antiDnase...we don't know why. A negative on those is meaningless (as far as we know, although it may indicate an underlying immune issue- not making sufficient titers) and a positive just means they've had a recent strep infection.

 

I don't know where socal is. What state are you in?

 

Oh, just realized..Southern California?

[dcmom]

My daughter had normal aso and antidnase titers about one month after documented strep infection and onset of pandas.

 

In my opinion those tests are useless, and even harmful, to obtaining pandas diagnosis.

 

There are many reasons your son may have a backslide (exposure to strep, other illness, undetectable reason). It may take more like 30 days of antibiotic to calm him. You could also combine that with a steroid burst.

[EAMom]

What dose of Azith. was your son on (and how much does he weigh)?

 

Contact Diana Pohlman at http://www.pandasnetwork.org/ . She has had some contact with Dr. Gupta at UC Irvine...so maybe that would be one place you could go to.

 

You should also consider having bloodwork run by Dr. Cunningham at Univ. of Oklahoma. There are many posts on this. Here is one: http://www.latitudes.org/forums/index.php?...ham+blood+tests During an exacerbation is the best time to do this.

 

BTW, my dd also had low ASO/anti-dnase b strep titers despite positive cultures and later high values from Dr. Cunningham.

 

Here is a post about ASO http://www.latitudes.org/forums/index.php?...art=#entry29305 read aug 24 and jan 11 posts.

 

I would also throat culture other family members to make sure you don't have any strep carriers that might be causing re-colinization with your son.

[faith]

Now that is interesting that several of you are indicating having had low ASO titers (us too, altho I'm still not sure where we fit in re PANDAS yet), but if some of you know there were positive strep, then I really wonder why those titers would be low. peglem, you may have something there about these kids not producing sufficient response, maybe that is exactly what it is? what exactly are the titers anyway, I mean I understand that it is supposed to understand recent strep infection, but why?, I mean what are those titers? are they the antibody response? what is the definition of that and why are they supposed to be elevated after strep infections? either it means nothing, or that part isn't working right, along with the messed up antibody response in the first place.

 

Does anyone here have kids who DID have high titers? and are their symptoms and presentations pretty much the same as the kids with low ones? perhaps there is something that distinguishes one group from the other? symptom-wise, I wonder if the ones with high titers are better or worse off than the rest? It may all be irrelevant afterall, but I'm curious. If anyone has anything to share here, I'd be interested.

 

Faith

[peglem]

Now that is interesting that several of you are indicating having had low ASO titers (us too, altho I'm still not sure where we fit in re PANDAS yet), but if some of you know there were positive strep, then I really wonder why those titers would be low. peglem, you may have something there about these kids not producing sufficient response, maybe that is exactly what it is? what exactly are the titers anyway, I mean I understand that it is supposed to understand recent strep infection, but why?, I mean what are those titers? are they the antibody response? what is the definition of that and why are they supposed to be elevated after strep infections? either it means nothing, or that part isn't working right, along with the messed up antibody response in the first place.

 

Does anyone here have kids who DID have high titers? and are their symptoms and presentations pretty much the same as the kids with low ones? perhaps there is something that distinguishes one group from the other? symptom-wise, I wonder if the ones with high titers are better or worse off than the rest? It may all be irrelevant afterall, but I'm curious. If anyone has anything to share here, I'd be interested.

 

Faith

The titers are antibodies that your body makes and they are specific to what ever substance they are made to get rid of. ASO titers would be antibodies the immune system makes specifically to attack (or mark for destruction) streptolysin O, which is not the actual bacteria, but a GABHS by product. Dnase is also a by product of GABHS (don't remember what it stands for). So, if the strain of GABHS you have is producing those 2 things, the immune system should be cranking out antibodies to get rid of it.

 

I could be wrong, but it seems to me like the low titer (ASO & AntiDnase) kids are the ones who have chronic strep- "carriers" who just don't seem to be able to get rid of it, and do not seem to get typical symptoms. I think the ones w/ higher titers are kids that get strep, but recover from it until they are exposed again. In either case the PANDAS is not caused by those particular antibodies....the Cunningham study seems to indicate that it is caused by some other GABHS antibodies.

[EAMom]

http://www.latitudes.org/forums/index.php?...art=#entry29305 This link is very informative (read both Aug 24 and Jan 11)

 

40% of kids with culturable strep don't get a rise in ASO or Anti-dnase b

 

from this link:

 

2) What amount of streptococcus is necessary to cause a detectable rise in ASO and AntiDNAseB?

This is unknown. Some people respond with high antibody counts while others have low counts. It is just not understood. Studies in 2003 by Kaplan, indicate that ASO rises in 53% of patients with culturable strep, AntiDNAseB rises in 45% of patients with culturable strep, and either ASO or AntiDNAseB rises in 60% of patients with culturable strep (i.e., 40% don't have such a rise).

 

Peglem is also right in that some strains of strep may cause more of a rise in titers. But, some people just don't get a rise in titers despite culturable strep (or pharyngitis). Also, in some people titers stay high for a long time, dropping off very slowly. In others, titers fall more quickly.

 

Dh did ask a strep expert at one point if "strep carriers" tend to have low ASO / anti-dnase b .... the expert said this was unknown/not studied.

[Debbie1]

My two PANDAS children have had extremely high titers with their exacerbations. Their titers have come down when symptoms improve, but are still higher than the normal range.

[smartyjones]

my son has had high titers and taken a long time to fall. in dec, ped did a culture after titers and was +. he had no typical physical signs of strep. previous strep infection was 2.5 years prior and only symptom was vomiting. the last time we had it drawn was june and were still high.

 

he presented with classic behavioral symptoms - intense separation anxiety, strepnoxiousness, clingyness, inappropriate fight or flight, wide pupils - but not any obvious tics. until recently, i said he had no tics but with more understanding of tics, i saw eye blinking once for 5 seconds and he would very occasionally touch each finger to his thumb.

 

i also wonder if high titers = different presentation than not high. i am curious if in those that do have high titers if that can be useful.

[ajcire]

Another low titers one here... I wonder how his titers would be though if I had the bloodwork done closer to when he actually had the strep. By time I had a clue as to what was going on with him, it had been quite a while later. This last time his dr. said he would do the bloodwork if he didn't test positive for strep (he had no classic strep signs.. just a sister with strep and his behavior and tic were back) but he tested positive so no idea what his titers were.

 

I am in awe of how much some of you know about this and the science aspect of it all. I feel like it is a foreign language still.

[peglem]

I think a lot of confusion over the value of the ASO/AntiDnase titers comes from the fact that Swedo used those in her studies...BUT, because she was only studying subjects w/ OCD/tics that correlated w/ strep infections, she needed to document strep infections in her study candidates. If the infection had already been resolved, so that a positive culture could not be obtained, she could use high titers as documentation that a strep infection had, indeed happened. She did not study kids who did not have documented strep...it was study criteria. Its only purpose was to confirm a past strep infection. Somewhere along the way, many doctors and others have misinterpreted this as a test for PANDAS...and negative titers to mean negative for PANDAS. This is not correct...a positive rapid or positive culture is in many ways better than high titers, because you know for sure when the strep infection actually occurred (although not for how long it has been going on).

 

My daughter saw a pediatric rheumatologist a few years ago. She had beaucoup documented +strep tests, correlated with behavioral exacerbations. But he said it couldn't be PANDAS because her titers were too low...THAT was frustrating!!!!

[EAMom]

Yes, and I am afraid that Beth Maloney (Saving Sammy) is perpetuating the confusion that ASO titers are some kind of a "test" of PANDAS. Her son had high titers. BTW...nowhere in the book does she mention ever getting a throat culture. Once she learns about PANDAS she gets the blood test done (ASO) but no culture.

[EAMom]

We did have a few doctors early on who tried to tell us our dd was not PANDAS (despite symptoms and positive cultures) b/c our ASO/anti-dnase b were low/normal.

[P_Mom]

Hi All,

 

I just wanted to add that we never tested with high titers either. I have read there are 3 different types of antibody responses in kids with strep...

 

1. Dramatic rise and sharp, fast fall

2. Readily rise and slower decline

3. Slower rise and very slow fall (can take years)

 

Perhaps depending on how your child responds to strep will indicate if you will get high titers or not. I did not get my kids titers done until 3 months after onset, and they were normal. Had I done it during the episode...who knows. His symptoms did rapidly resolve....bad episode lasting 2 weeks total.... then back to 99%.....so, perhaps he is the dramatic rise and sharp, fast fall kid??? This would indicate that your child is indeed producing antibodies....just how many and how fast do they return to normal??? I am just brainstorming here....

 

My kids never had chronic strep nor were ever carriers........yet, low titers in both. Both times they had strep, it was readily eradicated with Keflex. (cultures and blood draws done several times afterward to be sure)

 

It SEEMS to me to have no correlation.....titers (or absence of) and symptoms.

[EAMom]

We got titers and cultures on our dd 2mo. after original FEVER/onset of behavior change. The titers were low normal (with positive cultures) 1 mo. later (on antibiotics) the titers were even lower. 1 year later (on antibiotcs for over a year) strep titers were very low (basicially undectable), but Dr. Cunningham's values were in the high PANDAS range.

 

I suppose we could have totally missed a quick rise and fall (within 2 mo.) on our dd, but given that she was still culture positive, and 8 weeks should be a pretty good time for getting titers I suspect that she never had much of a rise in the first place.