Why the Whole Family Should Run Titers

[colleenrn]

EAMom

The thing I am not understanding is the super low doses of prophylactic antibiotics in some of his patients and in not even having some of his patients on antibiotics at all.

 

Colleen

[colleenrn]

Also, the once a day Augmentin. It has a short half life and works much better if given twice a day.

[Worried_Dad]

I do think his stance on this is evolving. Our son was one of those on the "standard low prophylactic dose" of 500 mg augmentin once a day, and it didn't work. But - based on our son's desperate situation - Dr. K was willing to prescribe the "Saving Sammy" dose and has supported the continuation of that dose for our son over the past 9 months. I think our son's dramatic response has made a believer out of Dr. K that at least some kids need that higher dose.

 

Dr. K has told me several times that he learns something new from each patient. I wish to heck more doctors had that attitude!

 

 

Also, the once a day Augmentin. It has a short half life and works much better if given twice a day.

[Mary M]

These posts made me request...yet again...for all of us to be drawn for ASO and AntiDnase B titers. The pediatrician was finally willing to bow to my request when I said that I am going to spend perhaps $15000 on IVIg so I better rule out any carriers or possible infective agents in the immediate family before we spend our life savings. She agreed with that logic but added that she wasn't sure our insurance company would cover the blood draw on healthy family members. Again, I said what's another couple hundred dollars when we're spending so much for IVIg. Doesn't it just seem logical to check family members who all live in the house? Thank you everyone for your posts here...I learn so very much from all of you.

[sf_mom]

Dr. K has always said to me when asking about long term antibiotics..... check back with me in 6 months because what I know today, might be different in 6 months . Although, we are under Dr. K's care post IVIG, we have not been following his recommended antibiotic protocol. Our son has always responded better to the higher dose antibiotics. AND currently, we are following more of a Lyme protocol with a mix of antibiotics that has really helped. We have a follow-up appointment with Dr. K to discuss in detail the revisions that were made and to figure out why it helped.

 

He has also said THAT HE CAN'T ignore the anomalies; i.e. kids that are responding better on high dose antibiotics. I think he's still trying to figure it all out.

 

-Wendy

Edited June 4, 2010 by SF Mom

[colleenrn]

I think it is great that he has an open mind about antibiotics and a willingness to learn from his patients! I wish all physicians could be like him in that way.

Colleen

[Worried_Dad]

I really need the advice of the "scientifically-minded" members of the forum.

 

After my ASO came back at 303 in March, I was able to get the local doc to prescribe a month of zithromax. It was "minimum dose" though, I think: only 250 mg per day. It did seem to help with my persistent sinus congestion.

 

But it didn't last. Per expert advice, I waited 2 months before re-testing ASO titer to see if it was at least coming down, since it should have declined in that time period (I've been told) after a full month of zithro.

 

So I called yesterday to get the results. It's gone up to 443! Talk about the wrong direction... yikes! More frustratingly, this local doc told me it "wasn't a cause for concern" and that - unless I or other family members have pharyngitis symptoms - there's no need for further abx. That does not make any sense to me! Virtually every member of our family has now tested positive via ASO titer, and we all live together in the same house. Seems more likely that I was just immediately re-exposed. And if we aren't all cleared of strep at the same time, isn't there significant risk that we'll just keep re-infecting each other?

 

I'm planning to push a different local doc to prescribe clindamycin for me, just as he did for my wife and non-PANDAS sons. I've heard this abx is very effective for eradicating stubborn strep. Does this make sense? Am I nuts in thinking this is in fact major "cause for concern" and that I shouldn't just ignore the rising ASO titer?

[EAMom]

I'm planning to push a different local doc to prescribe clindamycin for me, just as he did for my wife and non-PANDAS sons. I've heard this abx is very effective for eradicating stubborn strep. Does this make sense? Am I nuts in thinking this is in fact major "cause for concern" and that I shouldn't just ignore the rising ASO titer?

 

Clindamycin makes sense to me.

 

Did your wife and non-PANDAS kids have a declining titer?

 

Were your titers (initial and most recent) done at the same lab?

 

How is your PANDAS son doing?

Edited June 22, 2010 by EAMom

[matis_mom]

I'm no doctor but Clindamycin is what they prescribed for my 14yo who cultured positive without symptoms, I do hope it works!

 

How did it work for your wife?

 

Isabel

[Worried_Dad]

Hi, EAMom:

 

Too soon to know if the clindamycin is working for my wife and other 2 boys, I'm afraid. They're only a week or so into their 4-week prescriptions. Local doc has recommended we wait at least 2 months before re-testing ASO for them.

 

My titers were both done at the same lab (Quest), so the 303 --> 443 trend should in theory be meaningful.

 

Knock on wood, our PANDAS son is still doing great! He's doing a Programming class at a local Math & Science Center this week. We tried this 2 summers ago as an experimental prep for returning to school, and it was a disaster: when the time came back then, he fought against going and ultimately only made 4 of the 10 sessions. This time, he's actually excited about going, has a great attitude, and is even into doing the homework assignments. Totally different experience!!!

 

Thanks to all of you who let me know your background or info on clindamycin, including the PMs. It really helped to know that folks like Dr. T recommend this abx for the stubborn strep cases. I begged for a script from our family doc (who prescribed it for the rest of the family) and he agreed! So I start my own 4 weeks of clindamycin tomorrow.

 

Thanks again for the feedback. Invaluable!

 

 

Clindamycin makes sense to me.

 

Did your wife and non-PANDAS kids have a declining titer?

 

Were your titers (initial and most recent) done at the same lab?

 

How is your PANDAS son doing?

[laurenjohnsonsmom]

IowaDawn & WorriedDad,

 

We used rifampin along with omnicef (dd11 allergic to augmentin) to break the carrier state as suggested by Scott Smith PA. Worked like a charm. Our whole family tested positive too!

 

Hope this helps!

 

Lynn

 

www.pediatricweb.com/madisonped

[Worried_Dad]

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.

 

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!

[MomWithOCDSon]

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.

 

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!

Hey WD --

 

I am far from expert on this topic, so I'll look forward to seeing some of the others chime in. I will say, though, that more than one doctor has told us that it isn't the actual numbers regarding titers, but the direction. That some people have higher titers almost permanently than a lab range, but that doesn't necessarily translate to any existing illness, carrier state or anything else. So, does that also mean that, if it's "the norm" among your family, that your PANDA won't react as though he's been exposed to strep?

 

I'm still trying to sort out a similar conundrum on our end so, not to hijack, but hoping responders to you (and maybe you yourself) have a thought. Our DS13's titers recently increased, even though he's on the XR, still full strength, twice daily. So, we thought he was re-exposed, and we wanted him tested for a live strep infection. To which the pediatrician responds, well, he may still respond to exposure by having an increase in titers, but he's not going to actually "get strep" because he's on the Augmentin.

 

Only thing is, my DS NEVER had an active strep infection to begin with, so if his titers are still going to rise, with or without the XR, what's up with that?!?!

[matis_mom]

Hey WD --

 

I am far from expert on this topic, so I'll look forward to seeing some of the others chime in. I will say, though, that more than one doctor has told us that it isn't the actual numbers regarding titers, but the direction. That some people have higher titers almost permanently than a lab range, but that doesn't necessarily translate to any existing illness, carrier state or anything else. So, does that also mean that, if it's "the norm" among your family, that your PANDA won't react as though he's been exposed to strep?

 

I'm still trying to sort out a similar conundrum on our end so, not to hijack, but hoping responders to you (and maybe you yourself) have a thought. Our DS13's titers recently increased, even though he's on the XR, still full strength, twice daily. So, we thought he was re-exposed, and we wanted him tested for a live strep infection. To which the pediatrician responds, well, he may still respond to exposure by having an increase in titers, but he's not going to actually "get strep" because he's on the Augmentin.

 

Only thing is, my DS NEVER had an active strep infection to begin with, so if his titers are still going to rise, with or without the XR, what's up with that?!?!

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?

[matis_mom]

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.

 

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!

My titers came down (from 250 to 167) after 20 days on Biaxin, but now I have red throat and swollen tonsils. Does any one on your family have any signs/symptoms (I don't have symptoms, I feel fine, but then I look at my throat and can't deny what I see). So I'm being treated again, and I hope this works!

I understand your frustration after putting the whole family through a month of heavy duty abxs!

Who is your PANDAS ds doing, though? I think if he is stable you probably are ok, but if there is an increase in symptoms then yes, you probably need to back on antibiotics.

I wish there was a way to now 100% whether or not anyone has it. We are hoping ds will have plasmapheresis soon, and after the year we've had, we are not taking any chances, everyone will be on antibiotics for a couple of weeks.

Is there anyone else in the mix that could keep re-infecting you? Any dogs?