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Why the Whole Family Should Run Titers


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Hi all-

 

Thanks for all the concern. We had one VERY upset boy when he learned we had decided to not go to Chicago. And he had been Soo worked up about GOING!! Ha I was disappointed, too.

 

OK WorriedDad--I just got an email back from Dr. K and he said that Augmentin for our dd15 and we all take Augmentin simultaneously! ARGGGH!!! Didn't we already do this,Doc??

 

Strep C & G will cause ADB to increase w/o much of an ASO rise. GAS & skin will do the same. The latter is what we are going to look into. Our dd15 started having a pretty good flair with the adol pandas symptoms. Now I am putting some other symptom with Evan & my husband. VAGUE. Those two are going to the GP tomorrow and will try to get something besides Augmentin. (Zith..) No dogs....Hmmm wait a minute. She goes to the youth pastor's house for Bible study each week. And on other occasions. New dog w/n the last month. So. How do you check a dog?? Hmm

 

I'll keep you posted on this. I really didn't need to add anything to our saga!! Thanks for your concern.

 

Dawn

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Dawn, I am so sorry for what your family's going through!

 

Your experience definitely seems to prove that there's a genetic vulnerability in some families, and maybe specific, virulent strains of GAS that exploit it? Based on your post, I'm even more determined to get the rest of my family tested!

 

Dr. K's open-minded and willing to try new things, and he acknowledges he's always learning from his patients. I believe he'll work with you to try different treatments if you're not seeing results.

 

Please keep us posted on how things go. We can always learn from each other... and then share it with the docs!

 

 

Hi all-

 

Thanks for all the concern. We had one VERY upset boy when he learned we had decided to not go to Chicago. And he had been Soo worked up about GOING!! Ha I was disappointed, too.

 

OK WorriedDad--I just got an email back from Dr. K and he said that Augmentin for our dd15 and we all take Augmentin simultaneously! ARGGGH!!! Didn't we already do this,Doc??

 

Strep C & G will cause ADB to increase w/o much of an ASO rise. GAS & skin will do the same. The latter is what we are going to look into. Our dd15 started having a pretty good flair with the adol pandas symptoms. Now I am putting some other symptom with Evan & my husband. VAGUE. Those two are going to the GP tomorrow and will try to get something besides Augmentin. (Zith..) No dogs....Hmmm wait a minute. She goes to the youth pastor's house for Bible study each week. And on other occasions. New dog w/n the last month. So. How do you check a dog?? Hmm

 

I'll keep you posted on this. I really didn't need to add anything to our saga!! Thanks for your concern.

 

Dawn

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I just called my doc 2 days ago and asked for these tests too. I also asked to run mycoplasma too. I asked my doc back in Nov. and asked a doc friend of mine if my fam should have these done. They both told me no, it wasn't necessary. Thanks so much for this post.

 

Oh, man, I'm just sick about this.

 

For the past few years, my wife and I have (of course, like everybody on here) focused our energies on our PANDAS son's health challenges. To be cautious, we've all (me, wife, 2 non-PANDAS sons) repeatedly had strep tests done (the rapid throat culture, the longer 48-72 hour cultures) and all have been negative.

 

Well, I've been having some minor health issues for 4 years now: increasingly bothersome congestion, drainage, persistent cough. I've been told again and again by local docs that it "could not be strep." Several told me it had to be GERD or allergies. Now that our PANDAS son is doing better, I got around to seeing an allergist. All allergy tests negative, GERD test negative (no response to reflux meds). Allergist was baffled.

 

Last week, I finally had an appointment with the new local DAN doc who's taken our PANDAS son on as a patient. I did the standard food sensitivity testing, but also (just out of paranoia) asked them to run an ASO titer on me. They called this morning: my ASO is 303, well into the positive range for an adult.

 

ARRRRRGGGGHHHH!!!!

 

I feel so awful now. This could explain why my son improved dramatically after IVIG round 1 but got sick again, why he's never gotten all the way back to baseline. My instincts told me to get titers run previously... but our local family doc always stared at me like I was nuts and just recommended the throat culture.

 

Still waiting to find out what the next step is. DAN doc's nurse said she wanted me to come in for weekly bicillin injections, but I'm allergic to penicillin. I suggested at least a month of high-dose zithromax as an alternative, and she promised to ask the doctor.

 

Any other parents tested positive for strep? Am I likely a carrier? Is zithro the best way to go?

 

I have an e-mail into Dr. K asking these questions. I'll post his response. Now I'm determined to have the whole family tested for ASO, despite our family doc's skepticism. Oh, if only I had demanded this a couple of years ago!!!

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We had the whole family's titers run several months ago. We had been tracking titers on our children for many months and knew they were high, but then dh and I got tested.

 

I was normal. Dh had ASO of 290 and antiDNAseB of 960. He also tested positive for group B strep (make sure to request testing on all strains!!) and I tested positive for group G. Dh went on a month of Zithromax and the kids were all on antibiotics for a few months (PANDAS kids are still on). Repeat culture for strep was negative, but dh's titers did not go down. Then he tested positive for strep B again just days before my 3 kids had t&a surgery. He went on a 10 day course of a different antibiotic (can't remember the name, he is allergic to penicillin). Repeat culture was negative, but titers are still high.

 

We see some of the doctors mentioned frequently on this borad and they do not want to treat dh with further antibiotics at this time since his cultures have recently been negative.

 

2 out of my three kids have had rising titers despite recent t&a and months of antibiotics. :blink:

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Dawn, I am so sorry for what your family's going through!

 

Your experience definitely seems to prove that there's a genetic vulnerability in some families, and maybe specific, virulent strains of GAS that exploit it? Based on your post, I'm even more determined to get the rest of my family tested!

 

Dr. K's open-minded and willing to try new things, and he acknowledges he's always learning from his patients. I believe he'll work with you to try different treatments if you're not seeing results.

 

Please keep us posted on how things go. We can always learn from each other... and then share it with the docs!

 

 

Hi all-

 

Thanks for all the concern. We had one VERY upset boy when he learned we had decided to not go to Chicago. And he had been Soo worked up about GOING!! Ha I was disappointed, too.

 

OK WorriedDad--I just got an email back from Dr. K and he said that Augmentin for our dd15 and we all take Augmentin simultaneously! ARGGGH!!! Didn't we already do this,Doc??

 

Strep C & G will cause ADB to increase w/o much of an ASO rise. GAS & skin will do the same. The latter is what we are going to look into. Our dd15 started having a pretty good flair with the adol pandas symptoms. Now I am putting some other symptom with Evan & my husband. VAGUE. Those two are going to the GP tomorrow and will try to get something besides Augmentin. (Zith..) No dogs....Hmmm wait a minute. She goes to the youth pastor's house for Bible study each week. And on other occasions. New dog w/n the last month. So. How do you check a dog?? Hmm

 

I'll keep you posted on this. I really didn't need to add anything to our saga!! Thanks for your concern.

 

Dawn

Worrieddad-

 

Dr. K seems so stuck on Augmentin with us. I mention zith or biaxin or different abx and he comes back with Augmentin. I started another thread about my husband's CPAP as a culprit. Just trying to think outside the box--maybe not so outside the box. My husband is going to the doc today with our son and is asking for Zith for the whole fam-damily! For a month. Any CPAP in your life? Dawn

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Hi, Dawn:

 

Nope, no CPAP. We did recently pay to have our vents / ductwork cleaned just as a precaution, and we use an allergenic furnace filter and change it often. Don't have any obvious "shared infection sources" other than the usual - a family that hangs out together a lot. Of course, with strep, it's everywhere, and you can't really avoid exposure unless you live in a bubble!

 

I understand what you mean about Dr. K and augmentin. He really believes in it as the best anti-strep med and only seems to consider other choices if there's a penicillin allergy in the patient. He did tell me during one of our IVIG sessions that he thinks zithro is the best choice for other infectious agents like mycoplasma, but not for "standard" GAS. If you have a sympathetic local doc and the high-dose augmentin doesn't seem to be cutting it, I'd try to get your local doc to prescribe something else. One thing this forum proves is that no one abx works for everybody; some do better on augmentin, some on zithro, some on omnicef or keflex, some go to the "big eradication guns" like clindamycin / rifampin.

 

Hang in there. Sounds like you're at least finding the clues that can lead to the mystery being solved!

 

 

Worrieddad-

 

Dr. K seems so stuck on Augmentin with us. I mention zith or biaxin or different abx and he comes back with Augmentin. I started another thread about my husband's CPAP as a culprit. Just trying to think outside the box--maybe not so outside the box. My husband is going to the doc today with our son and is asking for Zith for the whole fam-damily! For a month. Any CPAP in your life? Dawn

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  • 2 weeks later...
Hi all-

 

Thanks for all the concern. We had one VERY upset boy when he learned we had decided to not go to Chicago. And he had been Soo worked up about GOING!! Ha I was disappointed, too.

 

OK WorriedDad--I just got an email back from Dr. K and he said that Augmentin for our dd15 and we all take Augmentin simultaneously! ARGGGH!!! Didn't we already do this,Doc??

 

Strep C & G will cause ADB to increase w/o much of an ASO rise. GAS & skin will do the same. The latter is what we are going to look into. Our dd15 started having a pretty good flair with the adol pandas symptoms. Now I am putting some other symptom with Evan & my husband. VAGUE. Those two are going to the GP tomorrow and will try to get something besides Augmentin. (Zith..) No dogs....Hmmm wait a minute. She goes to the youth pastor's house for Bible study each week. And on other occasions. New dog w/n the last month. So. How do you check a dog?? Hmm

 

I'll keep you posted on this. I really didn't need to add anything to our saga!! Thanks for your concern.

 

Dawn

Dawn,

Our doc said don't waste $ checking the dog, just treat him. If you are putting the whole family on abxs, you may as well do the dog at the same time!

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Oh, man, I'm just sick about this.

 

For the past few years, my wife and I have (of course, like everybody on here) focused our energies on our PANDAS son's health challenges. To be cautious, we've all (me, wife, 2 non-PANDAS sons) repeatedly had strep tests done (the rapid throat culture, the longer 48-72 hour cultures) and all have been negative.

 

Well, I've been having some minor health issues for 4 years now: increasingly bothersome congestion, drainage, persistent cough. I've been told again and again by local docs that it "could not be strep." Several told me it had to be GERD or allergies. Now that our PANDAS son is doing better, I got around to seeing an allergist. All allergy tests negative, GERD test negative (no response to reflux meds). Allergist was baffled.

 

Last week, I finally had an appointment with the new local DAN doc who's taken our PANDAS son on as a patient. I did the standard food sensitivity testing, but also (just out of paranoia) asked them to run an ASO titer on me. They called this morning: my ASO is 303, well into the positive range for an adult.

 

ARRRRRGGGGHHHH!!!!

 

I feel so awful now. This could explain why my son improved dramatically after IVIG round 1 but got sick again, why he's never gotten all the way back to baseline. My instincts told me to get titers run previously... but our local family doc always stared at me like I was nuts and just recommended the throat culture.

 

Still waiting to find out what the next step is. DAN doc's nurse said she wanted me to come in for weekly bicillin injections, but I'm allergic to penicillin. I suggested at least a month of high-dose zithromax as an alternative, and she promised to ask the doctor.

 

Any other parents tested positive for strep? Am I likely a carrier? Is zithro the best way to go?

 

I have an e-mail into Dr. K asking these questions. I'll post his response. Now I'm determined to have the whole family tested for ASO, despite our family doc's skepticism. Oh, if only I had demanded this a couple of years ago!!!

This is where I get confused. Does it mean if a family member is a carrier the child will not fully recover even if they are neg for strep.

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First, I should clarify that I'm not technically a carrier, because I'm not asymptomatic: just don't have the "classic" symptoms of strep pharyngitis. And I'm no strep guru, but I'll share our experience and my understanding of it.

 

PANDAS kids are incredibly vulnerable to and sensitive to group A strep (GAS). I've heard it described as being "allergic to strep": so like that child who is highly allergic to peanuts and will have a severe reaction to minimal exposure to peanut products, these kids have severe reactions to a minimal GAS exposure.

 

What we saw with our son - he improved on normal dose of abx but didn't fully recover, just seemed to smolder. As soon as abx were stopped, he spiraled into another major exacerbation. He improved dramatically after 1st round of IVIG, but that didn't last; he slowly regressed on a "standard" prophylactic dose of augmentin and eventually had another major exacerbation. Not until he went to the high-dose augmentin XR did he make steady, sustained progress.

 

So our theory? Per Buster's explanation, the high-dose XR served as a "shield" against strep being able to infiltrate and significantly stimulate the autoimmune response in our PANDAS son. Buster explains that - at sufficiently high dosage - the abx becomes bactericidal. Since he was living in a home with another person (me) infected with GAS, he was constantly re-exposed, and that's a very bad thing for PANDAS kids. So some treatments resulted in short-term progress, but that didn't last until he was shielded from re-infection by the "Saving Sammy" dose of augmentin XR.

 

That's one perspective. Buster or EAMom might be able to explain this more scientifically. (Ok... they can definitely explain it more scientifically!)

 

 

Oh, man, I'm just sick about this.

 

For the past few years, my wife and I have (of course, like everybody on here) focused our energies on our PANDAS son's health challenges. To be cautious, we've all (me, wife, 2 non-PANDAS sons) repeatedly had strep tests done (the rapid throat culture, the longer 48-72 hour cultures) and all have been negative.

 

Well, I've been having some minor health issues for 4 years now: increasingly bothersome congestion, drainage, persistent cough. I've been told again and again by local docs that it "could not be strep." Several told me it had to be GERD or allergies. Now that our PANDAS son is doing better, I got around to seeing an allergist. All allergy tests negative, GERD test negative (no response to reflux meds). Allergist was baffled.

 

Last week, I finally had an appointment with the new local DAN doc who's taken our PANDAS son on as a patient. I did the standard food sensitivity testing, but also (just out of paranoia) asked them to run an ASO titer on me. They called this morning: my ASO is 303, well into the positive range for an adult.

 

ARRRRRGGGGHHHH!!!!

 

I feel so awful now. This could explain why my son improved dramatically after IVIG round 1 but got sick again, why he's never gotten all the way back to baseline. My instincts told me to get titers run previously... but our local family doc always stared at me like I was nuts and just recommended the throat culture.

 

Still waiting to find out what the next step is. DAN doc's nurse said she wanted me to come in for weekly bicillin injections, but I'm allergic to penicillin. I suggested at least a month of high-dose zithromax as an alternative, and she promised to ask the doctor.

 

Any other parents tested positive for strep? Am I likely a carrier? Is zithro the best way to go?

 

I have an e-mail into Dr. K asking these questions. I'll post his response. Now I'm determined to have the whole family tested for ASO, despite our family doc's skepticism. Oh, if only I had demanded this a couple of years ago!!!

This is where I get confused. Does it mean if a family member is a carrier the child will not fully recover even if they are neg for strep.

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