Can I hear from those with normal titers?

[monarchcat]

We saw a PANDAS "specialist" who is a believer in titer levels. He acknowledges that some don't show a titer response, but says that between ASO and Anti-DNase B, 96% of people will show a response.

 

I just got the titer results back from my son's blood draw last thursday and his ASO is <25 (normal range 0-116) and Anti-DNase B is <70 (normal range 0-170). His anti-DNase B had never been checked before and the one time his ASO titer was checked, 4 weeks after a confirmed strep infection, it was <20.

 

Can I hear from you guys who have also not shown titer responses? What do your doctors say? What does it mean? I've read so much here, but my head is spinning lately.

 

Thanks.

[peglem]

Lack of titers was the bane of our early attempts at getting medical help. Her pediatrician was not concerned about the low titers because we did really have many, many positive RSTs that correlated with behavioral exacerbations. But the specialists he sent us to for help dismissed everything, saying she was just a strep carrier and since she was not getting infections it was not a problem, and since she was a carrier, of course she is going to test positive. The fact that her behavior improved on antibiotics was overlooked completely. In the end, it was the Cunningham results that really helped us- not so much the very high CamKII activity, but the high antiD2- an auto-antibody that indisputably should not be there.

 

We really had no improvement until the actual carrier state was addressed with rifampin. Her pediatrician and I believe that she was reacting to chronic slow release of strep from epithelial cells- dental work, especially caused explosive symptoms.

[dcmom]

Monarchcat- Titers mean very little.

 

My daughter had textbook overnight onset debilitating ocd. No other complicating health issues.

After four weeks of this, we figured it out and she had a positive strep test. Immediately went on antibiotics.

After about 8 weeks on antibiotics, she had her titers done, and they were normal.

 

Never bothered with titers again for either girl.

I was told by a colleague of Dr Swedo's- don't bother with titers and MRI's. She felt they were not indicitive of pandas, and only muddy the picture.

 

The only possible reason to check titers, would be to try to see/prove a recent strep infection. Positive titers would indicate a strep infection in the past, negative titers really mean nothing.

 

I do not allow titers to be taken. My girls hate the needle, and there really is no point.

 

Don't let this get you off track... Unfortunately, pandas really is a clinical diagnosis.

[LNN]

My son's ASO titers were 30 the day we started pheresis. They dropped to 3 when we were done. My son's ASO came back "negative" (no numeric value) 3 weeks after a raging strep infection where the rapid strep test turned + in 30 seconds (and it was his second strep within 6 weeks).

 

We've only had one Anti DNase B test done - 2 weeks ago and it too was "negative" - (suggestion - don't use Clinical Labs as they don't give numeric values). Now that could be because he hadn't had an infection in over 9 months. I've seen the study where they say between the two tests, 90+% of strep infections will show up.

 

But my son also failed 13 out of 14 pneumococcal titers, so he qualifies as having a selective antibody deficiency - in other words, his body fails to produce sufficient levels of strep antibodies to kill the stuff off (and those he does produce attack his brain). So my response to doctors is that these expectations might be fine for the general population. But I don't think they apply to kids with immune system issues. I think the fact you didn't see a high level right after a confirmed infection gives you some reason to think your child falls into this category.

 

Thankfully, the experts we've seen haven't been too focused on any one "measurement". They look at all the pieces and don't discount a diagnosis because of titer results. My personal experience is that if you feel like you've hit a wall with a doctor who seems to be closed minded in their diagnostic tools, move on. There are so many unknowns about PANDAS and no doctor should be acting like any measurement is definitive.

[faith]

my son has low titers (been check numerous times over the years, and the first time was about one month post a strep infection when he was 7). Immuno testing does not show any immune deficiencies.

[dut]

Hi - my dd6 is an absolute classic clinical picture of PANDAS with sudden onset OCD, some tics, chorieform movements and a number of the associated behaviour issues such as ODD, sleep issues, emotional lability, regression in writing and drawing, cognitive problems. She has responded really well to abx and steroids and is, currently, symptom free.

 

We have never had raised ASO or ADNB. We have had a somewhat elevated streptozyme and M proteins once for IgM. We have also come back negative for myco p.

 

I wouldn't put much stock in titers....

[momofgirls]

Dr Cunningham and Dr Bouboulis told me that some children do not respond well to carbohydrate antigens like strep and for this reason may not have raised titers. Also Dr K told me that even if titers are low and a child has symptoms it could be that the infection was long enough ago that the titers are normal but that the auto immune process is still on going. I am re-phrasing from an older email but that is how I remember it.

[Doug]

My daughter's blood work was all fine and we did every blood test there is..

but she still has PANDAS.

We went to Dr.K for a ivig about 1 month ago and we are seeing

some good signs..

If you can get to Dr.K or call and talk to him you would be

very happy.

Tracie&Doug

[Megs_Mom]

Our daughter has classic sudden onset severe OCD with illness (ear infection). We did not get her help for a long regretable time, due to low titers. Luckily she has a classic quick reaction to Prednisone & abx - and tested in the PANDAS range for Cunningham test. She is doing very well on abx (Azithromyacin). My only advice, unfortunately, is that you have to find a doctor that understands the clinical diagnosis of PANDAS.

[simplygina]

We saw a PANDAS "specialist" who is a believer in titer levels. He acknowledges that some don't show a titer response, but says that between ASO and Anti-DNase B, 96% of people will show a response.

 

I just got the titer results back from my son's blood draw last thursday and his ASO is <25 (normal range 0-116) and Anti-DNase B is <70 (normal range 0-170). His anti-DNase B had never been checked before and the one time his ASO titer was checked, 4 weeks after a confirmed strep infection, it was <20.

 

Can I hear from you guys who have also not shown titer responses? What do your doctors say? What does it mean? I've read so much here, but my head is spinning lately.

 

Thanks.

 

We had titers done and they were all normal too. Not surprising since he hadn't had a strep infection or obvious exposure for at least 6 months. Unfortunately our doctor is one that doesn't understand PANDAS very well yet and figures if it is PANDAS, he should have a titer response. If there isn't an active strep infection, no need for antibiotics. Lyme and mycoplasma were normal as well.

 

If you haven't done so, I would highly recommend doing a phone consult with one of the big PANDAS docs. It was such a relief to talk with someone who knew at least as much as I did and more about PANDAS and knew that after more than 5 years with this dang disorder, titers didn't mean much anymore. I've seen such a huge response on Biaxin there is no doubt in my mind that it is PANDAS any longer, and having a knowledgeable doctor agree with me is totally worth any cost associated. And if he gets worse, I know where to start.

[monarchcat]

I did a phone consult with Dr. Latimer last fall, but was never able to get in touch with her again (to be fair, though, I stopped trying after several attempts went unanswered...if I really pushed I could have talked with her again). I felt like I couldn't rely on her to guide my son's treatment so I wanted to find someone local. This dr came recommended and I do think he's a good dr. He understands PANDAS, but he is just very conservative about it and believes that abx are for prophylaxis only and therefore a low dose of pen vk should suffice.

 

DS has been sliding downward over the past two weeks (off abx) and a few days on pen were doing nothing to bring him back so last night I said "enough's enough". He refused to take the augmentin XR again, but agreed to take zith. I have a couple weeks worth from a previous Rx (back when he was first diagnosed) and I started him on 500mg/day last night. It's been 24 hours and we've already seen a huge improvement. Tonight was MARKEDLY different than the previous several nights that were getting progressively worse. Tonight there was no rage, anger, irrationality, etc. He laughed his way through his homework. Really, he was TOO giddy and that was a tad worrisome, but it was such an improvement that I'll take what I can get. At bed time he flashed into a few minutes of irrationality and anger, but hopefully that will be short-lived.

 

My plan is to do 2 weeks of zith 500mg/day then try to get him back on the augmentin XR if I can get him to take it again. He had done well with it for a month or so, but then choked on it a couple times and now is scared to take it. It is a huge pill, so I do understand his hesitation.

 

We had titers done and they were all normal too. Not surprising since he hadn't had a strep infection or obvious exposure for at least 6 months. Unfortunately our doctor is one that doesn't understand PANDAS very well yet and figures if it is PANDAS, he should have a titer response. If there isn't an active strep infection, no need for antibiotics. Lyme and mycoplasma were normal as well.

 

If you haven't done so, I would highly recommend doing a phone consult with one of the big PANDAS docs. It was such a relief to talk with someone who knew at least as much as I did and more about PANDAS and knew that after more than 5 years with this dang disorder, titers didn't mean much anymore. I've seen such a huge response on Biaxin there is no doubt in my mind that it is PANDAS any longer, and having a knowledgeable doctor agree with me is totally worth any cost associated. And if he gets worse, I know where to start.

[dee45]

Hi,

If you see such improvment I am wondering why you would not keep on the Zithromax is there a reason to switch back to Augmentin? just curious because we are contemplating whether to switch our son or not from Augmentin to Zithromax

 

 

 

Deanna

[monarchcat]

He was on the azith for about 2 months and we felt that he was starting to backslide. I think I probably just panicked, but we are in the northeast, and I had read that there could be some strains of strep that were resistant to azith around here. At the time he was on 250mg/day. I decided to try the augmentin xr because others had had luck with it. I also thought that between augmentin and azith, the augmentin would be the lesser of two evils for long term use.

 

This is why I've wanted more guidance... lol.. I feel as though I'm flying by the seat of my pants and don't quite know wth I'm doing half the time.

 

Hi,

If you see such improvment I am wondering why you would not keep on the Zithromax is there a reason to switch back to Augmentin? just curious because we are contemplating whether to switch our son or not from Augmentin to Zithromax

 

 

 

Deanna

[familyof4]

We too are a member of the group with classic PANDAS symptoms and non existant titers. The last time my son had strep the only symptom he had was extreme separation anxiety that sprang up out of no where. No classical symptoms - stomach ache or sore throat. We've checked titers 2x and probably won't bother again.

Edited March 17, 2010 by familyof4

[LNN]

He was on the azith for about 2 months and we felt that he was starting to backslide. I think I probably just panicked, but we are in the northeast, and I had read that there could be some strains of strep that were resistant to azith around here. At the time he was on 250mg/day. I decided to try the augmentin xr because others had had luck with it. I also thought that between augmentin and azith, the augmentin would be the lesser of two evils for long term use.

 

This is why I've wanted more guidance... lol.. I feel as though I'm flying by the seat of my pants and don't quite know wth I'm doing half the time.

 

I'm not sure any one abx is "the" answer. One immunologist (non-Pandas doc) suggested switching them every few months. I think both zith and augmentin work well for our kids, but I'm not sure either can prevent the "canary' reaction, since there's really no true infection for the abx to fight, just an autoimmune response to a perceived threat. For that, I think you need to look to an anti-inflammatory in conjunction with the abx to calm things down. Not sure if Motrin is enough or glucosamine or if you need to resort to prednisone (which, like DC mom, we have found to be an effective treatment, not strictly a diagnostic tool). I don't think it's just a matter of giving the "right" abx. That would be far too simple.