Why the Whole Family Should Run Titers

[matis_mom]

Another concerned Father: 4 weeks ago my ds9 was diagnosed with PANDAS. My entire family went to an ENT specialist to be tested for strep as my ds6 had symptoms and my dw. I had no symptoms. Throat swab was done. Wife was put on sulfamethoxazole (Generic for Septra) and son was given the same. I was not given anything. Test for strep came back positive for my ds6, dw was negative as mine. A week later my ds6 still had symptoms as did my wife. Son 6 was put on another week of abx and wife now had a bad sinus infection. So I went back in and had a blood test. Since I'm new to this and did not know all the different tests I asked for the blood test to show if I'm a carrier. They screwed up and only did the test to show if I was exposed to Strep. This test came back positive showing I was exposed. I went to an ENT and asked him. He said the only way to test for carrier was throat culture. He did notice that I had a sinus infection coming on. I was given Levaquin 750 mg for 10 days.

 

Now we read that we should have all been tested for Titer and ASO. Now we have all been on Antibiotics that ended today 9/10/10. Do we have to wait 30 days before we can take this test? Also, what are the correct test names that my family should have to determine who's the carrier and if the ABX are working?

 

And can someone tell me what blood test is the MP? A prior post mentioned MP and cannot find what that stands for? And what does it test?

 

I made it very clear when we went to the Specialist that I wanted the best possible test to check for the carrier in our family. And he ORDERED regular blood work! I'm so upset at this post. I feel very defeated and very upset that not one doctor has suggested this when we were all SICK. STAY STRONG AND STAY TOGETHER SO WE CAN ALL DEFEAT THIS!!!

I was just telling our PANDAS doc that there should be a "PANDAS FAMILY SUPPORT SPECIALIST" to deal with the rest of the family! We've gotten the run-around too, and I've gotten the "oh you poor crazy woman" look so many times, I don't even care any more. I just want to be DONE with this business!!!

[Joan Pandas Mom]

We just got my sons ASO back, it is in the mid 300's. It will be 11 months of abx, and 1 IVIG. The starting titer was 1,014 last October. We have been testing every 2 - 4 months. It has been coming down but this slowly? I have heard from different Dr's over the last 11 months that it can take 2 months, 1 said 6 months, my son's pedi read even up to 1 year to come down. I believe Dr. K told me it takes 2 months to come down.

[MomWithOCDSon]

My son got an ear infection while on XR, it is not bullet proof, although I have to say the "fallout" from that wasn't too bad. They did have to add Rifampin for 10 days. I would say if your son is not showing an increase in symptoms, it's probably ok to assume there is no active infection?

 

But if PANDAS is about the antibodies/titers and the inflammation they cause, then it seems that, at least in some cases, it doesn't matter whether there's an active infection or not, right? If merely being exposed can cause one's titers to rise, irrespective of infection, then the auto-immune response/inflammation is likely to continue to be an issue nonetheless, right?

[peglem]

My son got an ear infection while on XR, it is not bullet proof, although I have to say the "fallout" from that wasn't too bad. They did have to add Rifampin for 10 days. I would say if your son is not showing an increase in symptoms, it's probably ok to assume there is no active infection?

 

But if PANDAS is about the antibodies/titers and the inflammation they cause, then it seems that, at least in some cases, it doesn't matter whether there's an active infection or not, right? If merely being exposed can cause one's titers to rise, irrespective of infection, then the auto-immune response/inflammation is likely to continue to be an issue nonetheless, right?

Yes, I think you're right.

[Iowadawn]

Okay, our entire family (other than PANDAS son, who's still on Saving Sammy dose of XR) completed a month of clindamycin "eradication dose", waited a couple of months, and just re-tested our ASO levels. The local doc is concerned - and I certainly want to be cautious - but I need some guidance interpreting the results. Except for my wife, all of our titers have come down, but they're still positive. Here are the original and the new results.

 

Person___|______Original ASO_____|____New ASO

=========|=======================|===========

Dad------|---------443-----------|-----281

Mom------|---------241-----------|-----256

Son (10--|---------334-----------|-----247

Son (4)--|---------597-----------|-----328

 

So most of us are at least trending in the right direction. Our family doc believes the titers should have dropped further, though, and wants to refer us to an infectious disease specialist. Thought I remember reading a long time ago that ASO titers can take quite a while to return to the normal range after an infection (up to 6 months?), but I'm not sure, and think I've read that this isn't well studied.

 

On an ipod, here. Two weeks ago I emailed dr.k re our family newest titers. He said he was on a plane. Give him a couple days to think about what to do. A couple wks I guess! My dh aso went from neg to just outside normal. Mine of 380/756was the same. Dd15 was still 380/5440! Ds11 has lowest in 2 yrs of ccking. 189/480. Dd13 neg/120--lower. Our gp is waiting to hear from dr k . I told her I want bigger guns, tho. We see llmd in 2 wks. Hopeful he may be better able to tell us what to do. Frustrated, tho I know drk is in Europe. Ds has been on some sort of abx for nearly 2 years . At on point adb was 5400 last spring. Dawn

So has anybody else dealt with this (IowaDawn, Lynn J)? Should we still be concerned? Are more abx needed until we're sure we're safely in the normal range?

 

I need a sanity check!

[Worried_Dad]

Now we read that we should have all been tested for Titer and ASO. Now we have all been on Antibiotics that ended today 9/10/10. Do we have to wait 30 days before we can take this test? Also, what are the correct test names that my family should have to determine who's the carrier and if the ABX are working?

 

And can someone tell me what blood test is the MP? A prior post mentioned MP and cannot find what that stands for? And what does it test?

 

Hi, Wendy:

 

I believe the standard labs for GAS detection are ASO titer and Anti-DNAse B. From what I understand, the vast majority of strep-infected people will show positive on at least one of these two.

 

And "MP" is probably Mycoplasma pneumoniae, another nasty batcterial infection that triggers PANDAS-like symptoms. Part of the broader "PITAND" spectrum of this bloody disorder. While you're at it, the IGeneX lyme panel might be worthwhile.

 

Best of luck. Hope you get the tests you need!

[matis_mom]

My son got an ear infection while on XR, it is not bullet proof, although I have to say the "fallout" from that wasn't too bad. They did have to add Rifampin for 10 days. I would say if your son is not showing an increase in symptoms, it's probably ok to assume there is no active infection?

 

But if PANDAS is about the antibodies/titers and the inflammation they cause, then it seems that, at least in some cases, it doesn't matter whether there's an active infection or not, right? If merely being exposed can cause one's titers to rise, irrespective of infection, then the auto-immune response/inflammation is likely to continue to be an issue nonetheless, right?

Oh yes, absolutely, we get reactions to simple exposure too, but I'm saying do not discard the possibility of an actual infection, which may require a change in antibiotics.

[Worried_Dad]

Sigh. I'm just SO tired of everything with our local docs being a battle.

 

Hadn't checked ASO on the rest of our family in 3 months, when they were falling but still well above "normal" range. So I asked our family doc for orders to run titers again on the 4 of us (not including our PANDAS son). They called Friday with the results. For 3 of us, good news: ASO continues to fall (although my wife and I are still above 200). For our youngest ds, not good news: after falling from 597 to 254 after a month of clindamycin, his ASO has now risen back up to 499. No overt strep symptoms... but then, none of us ever had any "classic" strep symptoms or positive throat cultures.

 

So we begged for another round of abx for our youngest, noting that the clindamycin certainly worked well before and dropped his ASO dramatically. The nurse called and left a phone message explaining that the PA had "consulted with an infectious disease specialist" who told him that "abx would not be helpful in this situation." Huh?!? Clindamycin clearly helped before, leading to a dramatic drop in titers for our youngest. His ASO has risen 250 points in 2-3 months, which pretty clearly indicates a GAS infection. And he's living in the same house with a kid who has "RF of the brain." What the H-E-L-L ?!?

 

(Incidentally, this is the same ID doc who declined to take our PANDAS ds on as a patient because he "didn't see what else could be done.")

 

Our PANDAS ds has hit a minor rough patch in the past few weeks. Now we know why. And the local doc - who knows the full history and has seen the effect of abx for our PANDAS ds - won't do anything now because the specialist says it won't help.

 

ARRRRGH!

 

We see the LLMD in a couple of days for our PANDAS ds, but he's never seen our youngest, so he can't prescribe anything for him. Hoping he might agree to call our family practice PA and advise the use of abx for the youngest. Think the PA is just worried about having an expert recommendation for "CYA" purposes.

 

Is it just me, or do many docs seem to have abandoned common sense these days? (Rhetorical question dripping with sarcasm....)

[colleenrn]

I completely agree with you that with a rise of ASO from 254 to 599 definitely needs antibiotics. Do you think you would have any luck in getting antibiotics if you called back today and told them he now has physical symptoms (sore throat, whatever) I am an honest person, but this is ludicrous that parents have to battle to get the needed medication for their children.

 

Physicians shopuold be treating yong children that have ASO's of 599 with antibiotics in the first place. Does he know of the sibling's rheumatic fever. That alone should make him prescribe.

[kimballot]

I am wondering if you approved of the consultation with the ID doctor who said s/he could no longer help your other child. It seems to me that doctors need parental permission before sharing information with another professional or using that information to make decisions about your child's care. I would think that they would need HIPAA permission from you before doing this. It is possible that the doctor asked about the situation without identifying who the child was, but more than likely gave identifying information (eg: "She has a 10 year old brother with PANDAS" is identifying since PANDAS is rare and it would be clear who it is).

 

I don't want to pour fuel on your fire, but if you did not approve of this consult then I would ask the doctor to spend an equal amount of time consulting with a doctor with whom you approve and then give him the name of your favorite PANDAS doc.

[MomWithOCDSon]

Sigh. I'm just SO tired of everything with our local docs being a battle.

 

Hadn't checked ASO on the rest of our family in 3 months, when they were falling but still well above "normal" range. So I asked our family doc for orders to run titers again on the 4 of us (not including our PANDAS son). They called Friday with the results. For 3 of us, good news: ASO continues to fall (although my wife and I are still above 200). For our youngest ds, not good news: after falling from 597 to 254 after a month of clindamycin, his ASO has now risen back up to 499. No overt strep symptoms... but then, none of us ever had any "classic" strep symptoms or positive throat cultures.

 

So we begged for another round of abx for our youngest, noting that the clindamycin certainly worked well before and dropped his ASO dramatically. The nurse called and left a phone message explaining that the PA had "consulted with an infectious disease specialist" who told him that "abx would not be helpful in this situation." Huh?!? Clindamycin clearly helped before, leading to a dramatic drop in titers for our youngest. His ASO has risen 250 points in 2-3 months, which pretty clearly indicates a GAS infection. And he's living in the same house with a kid who has "RF of the brain." What the H-E-L-L ?!?

 

(Incidentally, this is the same ID doc who declined to take our PANDAS ds on as a patient because he "didn't see what else could be done.")

 

Our PANDAS ds has hit a minor rough patch in the past few weeks. Now we know why. And the local doc - who knows the full history and has seen the effect of abx for our PANDAS ds - won't do anything now because the specialist says it won't help.

 

ARRRRGH!

 

We see the LLMD in a couple of days for our PANDAS ds, but he's never seen our youngest, so he can't prescribe anything for him. Hoping he might agree to call our family practice PA and advise the use of abx for the youngest. Think the PA is just worried about having an expert recommendation for "CYA" purposes.

 

Is it just me, or do many docs seem to have abandoned common sense these days? (Rhetorical question dripping with sarcasm....)

 

Oh WD, so sorry!

 

For what it is worth, we cannot even convince any of our doctors to order tests for DH's and my titers, let alone treat us if they are revealed to be high! (No siblings in the house, so at least that's off the table.) Both DH and I have been symptomatic for strep in recent years, though, so I'm holding onto the hope that we're not currently playing a role in DS's condition . . . at least not in that particular way.

 

To try and err on the side of caution, though, DH and I take a daily dose of olive leaf extract (OLE). Based on some more recent information and research, I'm thinking of adding coconut oil, also. Thus far (knock on wood) we've managed to steer clear of just about everything except that nasty norovirus, which DH and I caught and battled through for 3 days each, and DS never showed any physical signs of, but definitely had some behavioral setbacks during and immediately after. So I'm hoping the OLE and other supplements that we're all downning now are actually helping to protect the whole family.

[Worried_Dad]

Oh WD, so sorry!

 

For what it is worth, we cannot even convince any of our doctors to order tests for DH's and my titers, let alone treat us if they are revealed to be high! (No siblings in the house, so at least that's off the table.) Both DH and I have been symptomatic for strep in recent years, though, so I'm holding onto the hope that we're not currently playing a role in DS's condition . . . at least not in that particular way.

 

To try and err on the side of caution, though, DH and I take a daily dose of olive leaf extract (OLE). Based on some more recent information and research, I'm thinking of adding coconut oil, also. Thus far (knock on wood) we've managed to steer clear of just about everything except that nasty norovirus, which DH and I caught and battled through for 3 days each, and DS never showed any physical signs of, but definitely had some behavioral setbacks during and immediately after. So I'm hoping the OLE and other supplements that we're all downning now are actually helping to protect the whole family.

 

Hah - we've been taking OLE as a "natural abx" too. Unfortunately, it hasn't worked out for us so far: whole family has been hammered with bugs (viral, we think) for the past month+. This time of year, there just doesn't seem to be any escape.

 

'Course, it's possible that our immune systems are just really, really wimpy....

[sf_mom]

Can you call your LLMD and fit your other son in or split your PANDAS son's appointment with younger son? I'm sure your LLMD would help... if he sees him in person.

 

-Wendy

[wornoutmom]

Seems like in Michigan it's easier to get crack than antibiotics. And don't even get me started on SSRIs.... I agree with Wendy - what about just showing up at the LLMD appointment with your youngest in tow - and a copy of his lab results? Also recommend posting this on the MI support group board - there may be some local connections/advice for you?

 

-Rachel

[Worried_Dad]

Thanks, Wendy and Rachel. Good ideas. Right now, I still have a call back into our family doc to discuss the urgency of abx treatment, but they haven't called back (sigh). We're planning to explain the situation to the LLMD tomorrow and ask for his recommendation for how to proceed, but don't want to step on that appointment because it's only our 2nd for PANDAS ds (and the one where the LLMD will be reviewing results of all the blood work he ordered at the 1st appt).

 

Still hoping that a simple phone call from the LLMD to the PA at our local family practice might do the trick, provide enough "CYA" to get the abx script. Guess we'll see....

 

P.S.: Rachel, loved the line about "in Michigan it's easier to get crack than antibiotics." If only it were a joke!!!

Edited January 26, 2011 by Worried Dad