Asymptomatic strep...high ASO...family members

[Iowadawn]

Hello all.

 

It has continued to be a haul for us. I have been on the forum for some time. I need to throw this out there and see what is new or recommended in Strep in the house. Our Ds13 is a PANDAS/Lyme case. He has had a number of ivig and been on abx since sept 2010. The bartonella (vegf) factor is very low, as is babesia. Strep ASO still above normal after all the abx. I ran my ASO....386. I ran my daughter's.....386. Now, for those who remember...we were a strep family with titters in the 1000's....5000 and above. So these are great. But I still think he is reacting.

 

What is the latest and greatest thoughts from those treating in he trenches....what to do with family members. Thanks. Dawn

[thenmama]

Hi Dawn,

 

We just learned our dd has been having recurrences of strep, generally asymptomatic except for the PANDAS symptoms. We didn't know the strep was an ongoing issue for our dd until a new nurse changed the swab method and we began catching it (she had PANDAS a long time before dx, so we thought strep was not behind the flares she's had more recently, since she does react to other infectious triggers). Now, though, when she starts ramping up w/ PANDAS symptoms we've been swabbing her and sure enough-- positive without strep symptoms. This has been a tremendous revelation; it explains why we've had puzzling setbacks, etc. My dd has been on prophylactic abx (actually treatment dose, I think-- 500 mg x 2/day) of Augmentin but has been getting strep, anyway. She's been negative w/ the same swab method in between positives, and my family doesn't get elevated titers even when they have had confirmed strep (in case either of those facts are meaningful to your query). Presently we don't have a PANDAS-specific specialist on our kids team, so can't say what they'd do for it, but our PANDAS-friendly, awesome ped just put my ds, dd, and dh on a course of a harder-hitting abx combo (Clindamycin + Rifampin) that has apparently been used lately for some tenacious strep strains. For various reasons she didn't feel I needed the abx otherwise we would have all been put on it. The goal is to wipe the strep out of our entire household.

 

Can't speak to the Lyme component, but thought I'd reply about the treating family members issue, even though it wasn't ordered by a PANDAS doc. Will be very interested to see what's being done for others on this front.

 

Cheers

[JPdad]

Has she had her T&A removed?

[PowPow]

thenmama, what is the new swab method? do tell!!

[thenmama]

Oh it's not terribly innovative-- no new medical technology or anything exciting like that-- just a new way to swab my dd She has never been able to tolerate the swab (sensory) and always jerks away/closes up. She was telling a nurse in our peds practice about this and the nurse suggested they try it with dd lying down, so she could tilt her head up, open her mouth wide so the nurse had easy access to the swab target area, and because her head would be on the table, dd wouldn't be able to jerk away. They tried it that way, which dd said was easier for her/better and voila-- for the first time she was positive for strep with an otherwise unexplained uptick of PANDAS symptoms. Ever since, we swab that way and have caught strep w/ PANDAS symptom increases a few times now. We didn't think strep was an ongoing problem for her since she had PANDAS so long before dx, she has flared from other illnesses/immune triggers, and she'd tested negative for strep (w/ the old method) so many times since being dx'd with PANDAS. So grateful for that nurse!

[Iowadawn]

Has she had her T&A removed?

 

We all have our tonsils. No one wants to take them out.

 

dawn

[sf_mom]

Dawn,

 

What an improvement!!!!!!!

 

My big question... Did you test or treat biofilm's yet? If you remember DH had high ASO 295 and Anti-DNase-B 980 that went up when treated 'initially'. We have treated entire family for biofilms and strep doesn't seem to be a huge issue anymore for PANDAS/Lyme son. Unfortunately, we haven't rechecked DH recently but will ask LLMD tomorrow for lab script to see where he stands too. We have definitely had exposures to strep without flairs and a recent bacterial infection in household (did not culture). Only younger son seemed to flair with PANS type symptoms and is already trending back to baseline as symptoms resolve. However, I don't believe we'll be able to judge appropriate responses to strep until we are fully off antibiotics and have positive culture.

 

Anyway... 'my guess' is maybe the strep is bound up in biofilm's?

Edited August 27, 2012 by SF Mom

[Iowadawn]

Dawn,

 

What an improvement!!!!!!!

 

My big question... Did you test or treat biofilm's yet? If you remember DH had high ASO 295 and Anti-DNase-B 980 that went up when treated 'initially'. We have treated entire family for biofilms and strep doesn't seem to be a huge issue anymore for PANDAS/Lyme son. Unfortunately, we haven't rechecked DH recently but will ask LLMD tomorrow for lab script to see where he stands too. We have definitely had exposures to strep without flairs and a recent bacterial infection in household (did not culture). Only younger son seemed to flair with PANS type symptoms and is already trending back to baseline as symptoms resolve. However, I don't believe we'll be able to judge appropriate responses to strep until we are fully off antibiotics and have positive culture.

 

Anyway... 'my guess' is maybe the strep is bound up in biofilm's?

 

The various times we have tried to go after teh biofilms with varying amounts of flagyl or GSE--nasty. We are in the trouble we are in now after a flagyl. We have to place Evan in a residential treatment center here in Iowa (PMIC). We are attempting to keep him on our leash and not the state's. Not sure if they will bite with our offer. We have to keep it out of the delinquency side. The risk is too great because of the charge. We do NOT want to see him start getting in the JvJustice web. Pray they take our counter to their offer.

 

We are headed out east to Dr. T to see if there is some component we are missing or just what to do. It has been a verrrry challenging week.

[bulldog24]

do you have a dog? My dog cultured positive (throat culture) if you need more info on this please let meknow.

[bulldog24]

the dog had no

symptoms just a carrier

[Iowadawn]

do you have a dog? My dog cultured positive (throat culture) if you need more info on this please let meknow.

 

no dog. or creatures.

[dcmom]

Dawn-

 

My kids both got strep (not tonsils) while on amoxicillin PLUS zithromax, both at treatment dose. We then used clindamycin and it erradicated everything.

 

I would consider a long-ish round of clindamycin (used to treat carriers) for EVERYONE at the same time.

 

Then I would follow up with steroids, if that is possible.

 

I know I sound like a broken record-but I cannot imagine where my kids would be without steroids- but with being able to use them, they are living a completely normal life.

 

Good luck- my heart goes out to you. Hopefully Dr T will have some answers!

[peglem]

Dawn-

 

My kids both got strep (not tonsils) while on amoxicillin PLUS zithromax, both at treatment dose. We then used clindamycin and it erradicated everything.

 

I would consider a long-ish round of clindamycin (used to treat carriers) for EVERYONE at the same time.

 

Then I would follow up with steroids, if that is possible.

 

I know I sound like a broken record-but I cannot imagine where my kids would be without steroids- but with being able to use them, they are living a completely normal life.

 

Good luck- my heart goes out to you. Hopefully Dr T will have some answers!

How often is it safe to use steroids?

[dcmom]

peg- I really don't know. We use them as sparingly as we can, yet I don't hesitate if pandas ramps up and it isn't controlled by abx and advil. I would say the kids end up on them about 3x per year- usually for the max of two weeks each time (sometimes only 5 days).

 

We have changed things up a bit- used to automatically do a 3 to 4 week tapering burst. Now I kinda go by symptoms. If we start them on the steroids before things get out of control- less seems to work well.

 

I know of a pretty conservative doc who did a 5 day burst each month to get a young girl with pandas under control. I think she did this for a year- not sure if still on this protocol.

 

My goal is the least meds possible- yet being sure we are aggressive enough to be effective. It is definitely a risk vs rewards type of equation

[peglem]

peg- I really don't know. We use them as sparingly as we can, yet I don't hesitate if pandas ramps up and it isn't controlled by abx and advil. I would say the kids end up on them about 3x per year- usually for the max of two weeks each time (sometimes only 5 days).

 

We have changed things up a bit- used to automatically do a 3 to 4 week tapering burst. Now I kinda go by symptoms. If we start them on the steroids before things get out of control- less seems to work well.

 

I know of a pretty conservative doc who did a 5 day burst each month to get a young girl with pandas under control. I think she did this for a year- not sure if still on this protocol.

 

My goal is the least meds possible- yet being sure we are aggressive enough to be effective. It is definitely a risk vs rewards type of equation

Her doc was willing to do a 5-7 day taper about every 6 weeks-she has frequent flares, but feels that once a month is not safe enough, and wants to try a low dose immune suppressant, which he feels will be safer. He's shopping for a rheumy to help with that...ugh, we also need to find a new PCP as she'll soon age out of her peds office.