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Why the Whole Family Should Run Titers


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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!!!

 

[/quote

 

 

 

Okay. Maybe you can help me. My son had sudden onset of ocd, ticks,sensory issues and behavior problem. He has had strep but he has had ear infections and throat infections. He tested negative for strep last week.. My youngest daughter has had scarlet fever and now she has strep again. but doesn't have any symptoms of Pandas. My son has a cough again but no fever. Sh Doctor T has ordered mycoplasma tests along with others. Does my daughter have anything to do with my sons pandas symptoms?

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My youngest daughter has had scarlet fever and now she has strep again. but doesn't have any symptoms of Pandas. My son has a cough again but no fever. Sh Doctor T has ordered mycoplasma tests along with others. Does my daughter have anything to do with my sons pandas symptoms?

 

VERY possible! The immune system makes antibodies upon encountering pathogens, even before an infection. In the case of PANDAS its the antibodies to the strep, not infection, that causes the neurological symptoms.

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Okay. Maybe you can help me. My son had sudden onset of ocd, ticks,sensory issues and behavior problem. He has had strep but he has had ear infections and throat infections. He tested negative for strep last week.. My youngest daughter has had scarlet fever and now she has strep again. but doesn't have any symptoms of Pandas. My son has a cough again but no fever. Sh Doctor T has ordered mycoplasma tests along with others. Does my daughter have anything to do with my sons pandas symptoms?

 

Yes! pandas kids can react when family members have strep. My dd definitely does...so we need to be vigilant in checking her sister (who is an assymptomatic carrier!).

 

There is also the possibility that your son still has strep himself (despite neg. cultures...if antibiotics temporarily caused a neg culture, or if the infection is hiding in the sinuses etc.) or another infection (mycoplasma, viral, etc) is causing pandas symptoms. Is your son still on abs?

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Okay. Maybe you can help me. My son had sudden onset of ocd, ticks,sensory issues and behavior problem. He has had strep but he has had ear infections and throat infections. He tested negative for strep last week.. My is an assymptomatic carrier!).

 

There is also the possibility that your son still has strep himself (despite neg. cultures...if antibiotics temporarily caused a neg culture, or if the infection is hiding in the sinuses etc.) or another infection (mycoplasma, viral, etc) is causing pandas symptoms. Is your son still on abs?

youngest daughter has had scarlet fever and now she has strep again. but doesn't have any symptoms of Pandas. My son has a cough again but no fever. Sh Doctor T has ordered mycoplasma tests along with others. Does my daughter have anything to do with my sons pandas symptoms?

 

Yes! pandas kids can react when family members have strep. My dd definitely does...so we need to be vigilant in checking her sister (who

 

 

 

 

 

Dumb Question. Is abs antibiotics? I have not started him on bioxin yet. I was waiting for the test results. I wonder how long mycoplasma labs take?

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Okay. Maybe you can help me. My son had sudden onset of ocd, ticks,sensory issues and behavior problem. He has had strep but he has had ear infections and throat infections. He tested negative for strep last week.. My is an assymptomatic carrier!).

 

There is also the possibility that your son still has strep himself (despite neg. cultures...if antibiotics temporarily caused a neg culture, or if the infection is hiding in the sinuses etc.) or another infection (mycoplasma, viral, etc) is causing pandas symptoms. Is your son still on abs?

youngest daughter has had scarlet fever and now she has strep again. but doesn't have any symptoms of Pandas. My son has a cough again but no fever. Sh Doctor T has ordered mycoplasma tests along with others. Does my daughter have anything to do with my sons pandas symptoms?

 

Yes! pandas kids can react when family members have strep. My dd definitely does...so we need to be vigilant in checking her sister (who

 

 

 

 

 

Dumb Question. Is abs antibiotics? I have not started him on bioxin yet. I was waiting for the test results. I wonder how long mycoplasma labs take?

 

Yes..abs are antibiotics.

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you could always start the biaxin anyway, and see if it helps your son's behavior

 

Even if he tested neg for strep, there could be strep hiding out somewhere that isn't easily cultured....or it could be the mycoplasma.

Edited by EAMom
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  • 2 months later...

Okay, the plot thickens for our family, and I wanted to share this.

 

Iowadawn, our family's titers are nowhere near the levels you're dealing with... but we have now all tested positive for recent strep infectiion via ASO titer. Every member of our family tested above the normal range, despite none of us ever having a positive rapid or extended throat culture over the past 3 years. So here's the summary.

 

Dad (me) -> ASO = 303

Mom -> ASO = 241

Brother (10) -> ASO = 334

Brother (4) -> ASO = 597

 

Per Buster's past posts, the titer trend is more meaningful than absolute numbers... but, still, every member of our family had what the doctor and the lab consider a positive result. None of us have been diagnosed with strep and none of us have had any of the "classic" symptoms of pharyngitis. What the heck is up with that?!? Made me think of SF Mom and her children's infamous "anthrax playdate" where all the kids developed post-infectious strep-related disorders afterward.

 

You scientists in the crowd, what's going on here? Is there some specific, really nasty strain of GAS that is super-hard to eradicate and triggers a severe autoimmune response in vulnerable families? Is this a "perfect storm" of strep virulence and genetic susceptibility?

 

Trying like heck to understand what we're fighting here. Our PANDAS son is doing great (thank god) while he's still on 2000 mg of daily augmentin XR, but he can't continue that dose forever. I'm a bit worried about how to clear our entire family so we can safely consider lowering the XR dose in the future. And - here's my paranoia showing - I sometimes see PANDAS symptoms in our 10-year-old that make me wonder about whether he's in the early stages, too.

 

What do you all think?

Edited by Worried Dad
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I would treat until titers are normalized. My husband has been treated and his titers are falling and that equals active infection to me. Madeleine Cunningham stated 'it is obvious that your husband shared your children's illness'.

 

Its is very clear to me.... we have to get our entire family well. By the way, our younger twins (just turned three yesterday) have done very well on antibiotics alone. We are hopefully that more aggressive treatments are not required but only time will tell.

 

-Wendy

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Worried Dad-

 

Thanks for posting. Our family of 5 is (impatiently) waiting to queue up for blood draw to check titers after a month of zith in March. Dr. K said we had to wait 2 months after we ended the abx to run them. I can not wait. Evan's had a second IVIG & on Augmentin 875 bid. We will ask to keep him on this dose, though I think zith was better. I'll beg for that, first. I'll keep you posted on teh results of the blood draw. -Dawn

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so how could one titer, DNase, be elevated in my dh, but ds's aso's are only elevated, never DNase. Does it really matter anyway? Mine have not been elevated but I am going to have them checked again this week.

 

I would treat until titers are normalized. My husband has been treated and his titers are falling and that equals active infection to me. Madeleine Cunningham stated 'it is obvious that your husband shared your children's illness'.

 

Its is very clear to me.... we have to get our entire family well. By the way, our younger twins (just turned three yesterday) have done very well on antibiotics alone. We are hopefully that more aggressive treatments are not required but only time will tell.

 

-Wendy

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We are the ones dr. K told to wait 2 mo post a month of abx. I begged a couple weeks ago to do the blood draws and his response was "unfortunately 2 months was the minimum to see a fall in titer levels." At that time we will assess if "bigger guns" are needed, he said. Honestly, I am thinking we will need bigger guns, w/o going into details. Let me know if it was 2 weeks!! Dawn -_-

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