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Joan Pandas Mom

UNBELIEVABLE

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My older (nonPANDAS) son had his titers checked in late Sept. They were elevated. He also had a persistent cough for 3 weeks so I was able to purswade pedi to give abx. I had his titers checked again last Tuesday and asked for the results on Friday when I took my incapacitated with PANDAS son in to discuss his weight loss. My non PANDAS son's titers went from 244 in Sept. to 291 Friday. Pedi gave me the well they really are not that elevated, blah, blah, blah. I told him elevated was elevated and they are rising. I insisted my older son come in for a throat culture. Pedi wanted to put it off until sometime next week, I reminded pedi just how sick my PANDAS son has been, reminded him he has no life, pleaded with him to culture my older son. I told him I could have him there in 15 min. so he did see fit him in. Well, I just listened to a message from Sat from Pedi's office. My non PANDAS son has some type of strep growing and they have to have the culture sent over to the Hospital to determine the best antibiotic to put him on. No wonder my PANDAS son isn't getting better. Strep is right here in the house. I'm SOOOO tired of fighting for every thing. I'm tired of being looked at by pedi like I'm a 2 headed crazy lady. Buster printed a while ago some facts from Dr. Kurlan and Dr. ?? stating rising titers are a sign of infection. Before we left Pedi's off Friday, he tried to tell me again that PANDAS is still controversial . He is the one who told me about PANDAS 6 years ago with the sudden, drastic change in my son. He is the one who told me that although my DS didn't exhibit any strep symptoms at that time, he was going to culture him anyway and sure enough my son had strept and elevated titers then. He has been our Pedi for 19 years, time to find a new one.

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Hi,

 

It really is a battle. I'm sorry for all you are going through.

 

One slight comment is that rising titers are not a sign of an active strep infection, but rather that there was an active strep infection 1-4 weeks ago (in the case of ASO) and 4-6 weeks ago (in the case of Anti-DNAseB). ASO and AntiDNAseB are responses to exotoxins of GABHS. Usually people go to the titers only if they really think there was strep but there's no positive culture or they missed it.

 

Has your PANDAS son done well when inbetween episodes?

 

Buster

 

My older (nonPANDAS) son had his titers checked in late Sept. They were elevated. He also had a persistent cough for 3 weeks so I was able to purswade pedi to give abx. I had his titers checked again last Tuesday and asked for the results on Friday when I took my incapacitated with PANDAS son in to discuss his weight loss. My non PANDAS son's titers went from 244 in Sept. to 291 Friday. Pedi gave me the well they really are not that elevated, blah, blah, blah. I told him elevated was elevated and they are rising. I insisted my older son come in for a throat culture. Pedi wanted to put it off until sometime next week, I reminded pedi just how sick my PANDAS son has been, reminded him he has no life, pleaded with him to culture my older son. I told him I could have him there in 15 min. so he did see fit him in. Well, I just listened to a message from Sat from Pedi's office. My non PANDAS son has some type of strep growing and they have to have the culture sent over to the Hospital to determine the best antibiotic to put him on. No wonder my PANDAS son isn't getting better. Strep is right here in the house. I'm SOOOO tired of fighting for every thing. I'm tired of being looked at by pedi like I'm a 2 headed crazy lady. Buster printed a while ago some facts from Dr. Kurlan and Dr. ?? stating rising titers are a sign of infection. Before we left Pedi's off Friday, he tried to tell me again that PANDAS is still controversial . He is the one who told me about PANDAS 6 years ago with the sudden, drastic change in my son. He is the one who told me that although my DS didn't exhibit any strep symptoms at that time, he was going to culture him anyway and sure enough my son had strept and elevated titers then. He has been our Pedi for 19 years, time to find a new one.

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Hi Buster. Thanks so much for your help and information on this forum, you have been so much help to all of us. I'm sorry if I maybe misquoted you or misinterpreted your work. I was looking at your post from August 24, 2008 on "A little bit about ASO titers." On page 2 under What does this mean summary, "a rising ASO titer (regardless of absolute value) is an indication of GABHS strep; however, you need a baseline to be sure it is rising." I found too (thanks to your help) a medline abstract, "The human immune response to streptococcal extracellular antigens; clinical, diagnostic and potential pathogenetic implications." it stated , "the analyses clearly document in some instances for the first time, that an increase in antibody titer more accurately defines infections than does an absolute titer (eg. "upper limit of normal"), that antibody titers can remain elevated for man months even without GAS, and that some individuals may harbor GAS continuously for months or years without symptoms of infections and without an associated immune response." This was by Dr. Kurlan and Leckman and Kaplan too. My older son has strep pneumonia so I'm not sure how, or if it is playing a part in my PANDAS son recovery. I am assuming it is because Dr. K and Dr. B have family members titers checked. Dr. B. said any "exposure" to PANDAS kid to anything is like putting wood on a fire that you are trying to put out for these kids.

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I'm sorry you're going through this.I wish doctors would realize how in the case of PANDAS families it is better to err on the side of caution when it also comes to PANDAS siblings. We had a ped that would prescribe abs for my non-PANDAS kids if we brought them in for a strep test while we waited for cultures. Well, he was promoted and left. Some remaining peds in the practice, even though I remind them all my kids get asymptomatic strep, we've had false rapids before, and I have a PANDAS child that has seen the depths of ######, now won't give abs until the culture results are in. Well, I shouldn't say all the peds are like that, but I've encountered two. So, now I must weed out which ones "get it" in the practice and will give them something while waiting on cultures and request appts specifically with them. Why can't I find one of those doctors that still prescribe abs over the phone?

 

 

My older (nonPANDAS) son had his titers checked in late Sept. They were elevated. He also had a persistent cough for 3 weeks so I was able to purswade pedi to give abx. I had his titers checked again last Tuesday and asked for the results on Friday when I took my incapacitated with PANDAS son in to discuss his weight loss. My non PANDAS son's titers went from 244 in Sept. to 291 Friday. Pedi gave me the well they really are not that elevated, blah, blah, blah. I told him elevated was elevated and they are rising. I insisted my older son come in for a throat culture. Pedi wanted to put it off until sometime next week, I reminded pedi just how sick my PANDAS son has been, reminded him he has no life, pleaded with him to culture my older son. I told him I could have him there in 15 min. so he did see fit him in. Well, I just listened to a message from Sat from Pedi's office. My non PANDAS son has some type of strep growing and they have to have the culture sent over to the Hospital to determine the best antibiotic to put him on. No wonder my PANDAS son isn't getting better. Strep is right here in the house. I'm SOOOO tired of fighting for every thing. I'm tired of being looked at by pedi like I'm a 2 headed crazy lady. Buster printed a while ago some facts from Dr. Kurlan and Dr. ?? stating rising titers are a sign of infection. Before we left Pedi's off Friday, he tried to tell me again that PANDAS is still controversial . He is the one who told me about PANDAS 6 years ago with the sudden, drastic change in my son. He is the one who told me that although my DS didn't exhibit any strep symptoms at that time, he was going to culture him anyway and sure enough my son had strept and elevated titers then. He has been our Pedi for 19 years, time to find a new one.

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All I was meaning was that while a rising titer could mean an active infection it also can mean that there was a past infection. Both are possible. In most kids, the infection is cleared on 10th day with antibiotics, and in ~70% of cases, kids will clear on their own in 14 days with or without antibiotics. However in about 30% of cases, kids won't clear without antibiotics. In about 10% of those cases, the strain of strep is a rheumatic strain and in about 4-6% of the untreated cases the kids get acute rheumatic fever. If you take the US population of kids 5-12, this is about 42M. So we're talking ~168,000 potential cases in the US of ARF. About 30% of those get Sydenham Chorea, so the estimated amount of SC is around 50,000 cases. Of that around 70% get OCD, so that's about 35,000 cases of OCD fo the rheumatic strain version. PANDAS may be the same strain or different, we don't know.

 

Buster

Hi Buster. Thanks so much for your help and information on this forum, you have been so much help to all of us. I'm sorry if I maybe misquoted you or misinterpreted your work. I was looking at your post from August 24, 2008 on "A little bit about ASO titers." On page 2 under What does this mean summary, "a rising ASO titer (regardless of absolute value) is an indication of GABHS strep; however, you need a baseline to be sure it is rising." I found too (thanks to your help) a medline abstract, "The human immune response to streptococcal extracellular antigens; clinical, diagnostic and potential pathogenetic implications." it stated , "the analyses clearly document in some instances for the first time, that an increase in antibody titer more accurately defines infections than does an absolute titer (eg. "upper limit of normal"), that antibody titers can remain elevated for man months even without GAS, and that some individuals may harbor GAS continuously for months or years without symptoms of infections and without an associated immune response." This was by Dr. Kurlan and Leckman and Kaplan too. My older son has strep pneumonia so I'm not sure how, or if it is playing a part in my PANDAS son recovery. I am assuming it is because Dr. K and Dr. B have family members titers checked. Dr. B. said any "exposure" to PANDAS kid to anything is like putting wood on a fire that you are trying to put out for these kids.

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One slight comment is that rising titers are not a sign of an active strep infection, but rather that there was an active strep infection 1-4 weeks ago (in the case of ASO) and 4-6 weeks ago (in the case of Anti-DNAseB). ASO and AntiDNAseB are responses to exotoxins of GABHS. Usually people go to the titers only if they really think there was strep but there's no positive culture or they missed it.

 

 

buster -- so how do titers that take a long time to fall come into it?

 

my ds did have high titers with initial episode. 20 mths later, his ASO was much lower and anti-DNase B almost nothing. however, if this was the first time taking titers, one would believe ASO to be elevated -- and thus, believe he had a recent infection. 6 mths prior to that titer test he had a negative culture. of course, we know he has a screwy reaction to strep so perhaps that throws everything anyway. i do actually believe he has a stealth, hard to eradicate infection -- but, according to traditional medicine, he tests neg with a culture and has falling titers -- so according to present understanding of titers, this would show past infection that he's gotten over, right? the assumption is that strep is no longer a problem in and of itself, right?

 

my older son, had high titers -- higher Anti-DNaseB -- so the assumption is the infection was longer ago -- i actually think 3 mths prior to titers.

 

i guess the question is -- is there really any way to know when the infection was and if it has actually cleared? we can't really use titers to show clearing of infection, can we?

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Joan, Yes I would agree it is time for a new doc, for both children. Are you thinking about longer run of abx for non pandas son? To eradicate. I would say fight for that. Good that they are running sensitivity testing on the bacteria. Let us know the type. I know you have been on here a long time but if you post again where you are maybe others can help find a new doc. Sorry you have this struggle.

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Really confused, pedi's office just called, non pandas son's sensitivity test for strep pneumoniae, that was sent to the hospital, came back mixed flora without isolated pathogens. They don't prescribe for that. Now what? I don't want my son on abx, but I'm concerned about the rising titers.

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