Does active strep and low titers show it's not relevant?

[ajcire]

I don't know if my ds will test positive for strep right now BUT it's in my house.. I got the call today about my non pandas dd that the culture taken yesterday was positive today and they told me to come in with my youngest non pandas ds because he woke up with 102 fever today... so far his is neg. but who knows what it will show in the culture... my pandas ds is scheduled for bloodwork Tuesday.... I will ask them to culture him as well for obvious reasons... if the strep bloodwork they are showing comes back low and he the culture is positive would that be enough to convince my ped that the bloodwork doesn't matter? Or is that too simple because then there would be no questions on the titers?

[peglem]

I don't know if my ds will test positive for strep right now BUT it's in my house.. I got the call today about my non pandas dd that the culture taken yesterday was positive today and they told me to come in with my youngest non pandas ds because he woke up with 102 fever today... so far his is neg. but who knows what it will show in the culture... my pandas ds is scheduled for bloodwork Tuesday.... I will ask them to culture him as well for obvious reasons... if the strep bloodwork they are showing comes back low and he the culture is positive would that be enough to convince my ped that the bloodwork doesn't matter? Or is that too simple because then there would be no questions on the titers?

 

Are you talking about ASO/Dnase titers? A positive strep test should negate the need for the titers, unless they want to check for a PREVIOUS strep infection, as those titers do not indicate current infection. At any rate, neg. ASO/Dnase do not rule out previous strep infection, but positives confirm them. Did that answer your question?

[thereishope]

I would think a positive throat culture would make thing a heck of a lot easier if the titers are low. Keep in mind, some kids do have setbacks when they are exposed to strep as well w/o being + themself.

 

Out of curiosity, did you take your strep + child in because they were sick or just to rule out strep in the family?

[ajcire]

I don't know if my ds will test positive for strep right now BUT it's in my house.. I got the call today about my non pandas dd that the culture taken yesterday was positive today and they told me to come in with my youngest non pandas ds because he woke up with 102 fever today... so far his is neg. but who knows what it will show in the culture... my pandas ds is scheduled for bloodwork Tuesday.... I will ask them to culture him as well for obvious reasons... if the strep bloodwork they are showing comes back low and he the culture is positive would that be enough to convince my ped that the bloodwork doesn't matter? Or is that too simple because then there would be no questions on the titers?

 

Are you talking about ASO/Dnase titers? A positive strep test should negate the need for the titers, unless they want to check for a PREVIOUS strep infection, as those titers do not indicate current infection. At any rate, neg. ASO/Dnase do not rule out previous strep infection, but positives confirm them. Did that answer your question?

 

 

Yes those are what I am talking about.... the thing was that the dr. was going to do the titers prior to the strep in my house because *banging my head* he said that if the amox didn't take care of stuff maybe it wasn't pandas... .so he said he would run the bloodwork because what's the point of the antibiotics if he doesn't have high titers... *banging my head more* He was not the dr. I saw yesterday and today with my others so I couldn't ask him... but I am supposed to go tuesday for that bloodwork. Maybe he will just want to run the culture now but of course the fact that we might be dealing with active strep is messing things up for my trying to figure stuff out..... Ironically after telling the dr. that I didn't think the amox was doing it, I am not sure I was right... he's still clearing his throat a little but it is better than it was... unfortunatley we just finished a month and a half on the amox and it has now been stopped as of a few days ago.. so of course I guess that means my ds can still get strep now.

 

Something good came out of all this though! The dr. I saw today told me he would be happy to do the blood draw for the cunningham test. I am just waiting for the kit. Unfortunately this dr. doesn't seem comfortable treating pandas but not for lack of believing... just said he doesn't know enough about it and treatment... one of the other dr's seems comfortable with prescribing antibiotics but seems to be going by the low titers = no pandas thing and is a big fan of amox and said that amox would kill strep and if it's not helping it must not be Pandas too.

 

But if we know we know he has strep and also know he had it in Sept. wouldn't low titers indicate it's clearly not proving anything for him? We had this bloodwork done last year and it was within normal range... that dr. I saw said he felt ds still had PANDAS.. that it would have helped him with confirmation but that low titers didn't rule anything out... unfortunately that dr. no longer takes insurance.

[peglem]

I don't know if my ds will test positive for strep right now BUT it's in my house.. I got the call today about my non pandas dd that the culture taken yesterday was positive today and they told me to come in with my youngest non pandas ds because he woke up with 102 fever today... so far his is neg. but who knows what it will show in the culture... my pandas ds is scheduled for bloodwork Tuesday.... I will ask them to culture him as well for obvious reasons... if the strep bloodwork they are showing comes back low and he the culture is positive would that be enough to convince my ped that the bloodwork doesn't matter? Or is that too simple because then there would be no questions on the titers?

 

Are you talking about ASO/Dnase titers? A positive strep test should negate the need for the titers, unless they want to check for a PREVIOUS strep infection, as those titers do not indicate current infection. At any rate, neg. ASO/Dnase do not rule out previous strep infection, but positives confirm them. Did that answer your question?

 

 

Yes those are what I am talking about.... the thing was that the dr. was going to do the titers prior to the strep in my house because *banging my head* he said that if the amox didn't take care of stuff maybe it wasn't pandas... .so he said he would run the bloodwork because what's the point of the antibiotics if he doesn't have high titers... *banging my head more* He was not the dr. I saw yesterday and today with my others so I couldn't ask him... but I am supposed to go tuesday for that bloodwork. Maybe he will just want to run the culture now but of course the fact that we might be dealing with active strep is messing things up for my trying to figure stuff out..... Ironically after telling the dr. that I didn't think the amox was doing it, I am not sure I was right... he's still clearing his throat a little but it is better than it was... unfortunatley we just finished a month and a half on the amox and it has now been stopped as of a few days ago.. so of course I guess that means my ds can still get strep now.

 

Something good came out of all this though! The dr. I saw today told me he would be happy to do the blood draw for the cunningham test. I am just waiting for the kit. Unfortunately this dr. doesn't seem comfortable treating pandas but not for lack of believing... just said he doesn't know enough about it and treatment... one of the other dr's seems comfortable with prescribing antibiotics but seems to be going by the low titers = no pandas thing and is a big fan of amox and said that amox would kill strep and if it's not helping it must not be Pandas too.

 

But if we know we know he has strep and also know he had it in Sept. wouldn't low titers indicate it's clearly not proving anything for him? We had this bloodwork done last year and it was within normal range... that dr. I saw said he felt ds still had PANDAS.. that it would have helped him with confirmation but that low titers didn't rule anything out... unfortunately that dr. no longer takes insurance.

Would it help, do you think, to bring in a copy of the diagnostic criteria for PANDAS? I mean, what you really need, (and apparently what they are not clear on) is an association of symptom exacerbations with + strep. The ONLY reason for running those titers is to confirm that there was a missed strep infection (so to establish that association). Maybe the doctor who feels he doesn't know enough to treat can be educated? I'm exasperated for you!

[ajcire]

Would it help, do you think, to bring in a copy of the diagnostic criteria for PANDAS? I mean, what you really need, (and apparently what they are not clear on) is an association of symptom exacerbations with + strep. The ONLY reason for running those titers is to confirm that there was a missed strep infection (so to establish that association). Maybe the doctor who feels he doesn't know enough to treat can be educated? I'm exasperated for you!

 

 

Yeah.. I think that the close re-exposure with now my son possibly now having it is going to mess with things... the dr. who wants the bloodwork first saw my son in sept when once again my non pandas daughter had strep... my ds was showing some signs prior to my knowing dd had strep but when I knew she had it I brought him right in and sure enough it was positive... before knowing it was positive the dr. said IF it wasn't positive he would run the bloodwork.. so at least he knew the positive culture was enough.... but somehow I think he is going to try to explain away some stuff as coincidence now if the titers aren't high... unless my son has a positive culture.. that was not something I was expecting since just got off the amox and at the time I scheduled the bloodwork nobody had it in my house.

 

I am going to try to talk to the dr. I saw today about what you suggested... that maybe he would like to give this a try... he actually asked ME if I had any names of doctors to refer a few of his other patients to.... I told him I would give him a list but that I don't know any of them personally... I got the list from Beth M and will pass it to him.. because the one dr. he has been referring people to no longer takes insurance... BUT the confusing thing to me is that there is a dr. in the practice willing to prescribe antibiotics for it but clearly that is not who this dr. is referring anyone towards... I think this dr who is trying to treat it means well, wants to and believes but just doesn't know enough about it... happened to have had a few kids respond to amox and that is what he is now going by.

 

Today's doctor also suggested that I take my non pandas dd to a pediatric ent to try to get to the route of why she gets so much strep throat (with classic signs..fever and sore throat)... I wish I knew who is passing it to whom.. if my pandas ds has it now I won't know once again if he is getting it first and me not knowing he has it and then passing it or if she is getting it first... not that it really matters I guess.

 

Not sure how much of this post made sense... it's all starting to not make sense to me. I am almost starting to feel like everything is all in my head. I should add that for a variety of reasons I just can't get to one of the other doctors on the list right now... I know that would certainly be an obvious solution.

[EAMom]

So, if you get titers drawn now and they are low...would that convince your doc that titers can be low, even if there was a positive culture the month b-4? And that low titers do NOT necessarily mean your son didn't have strep? Maybe...depends on how much of a block head your doctor is!

 

http://www.latitudes.org/forums/index.php?...art=#entry29305

[ajcire]

So, if you get titers drawn now and they are low...would that convince your doc that titers can be low, even if there was a positive culture the month b-4? And that low titers do NOT necessarily mean your son didn't have strep? Maybe...depends on how much of a block head your doctor is!

 

http://www.latitudes.org/forums/index.php?...art=#entry29305

 

 

Thanks EAMOM... I think I will bring that with me!

 

I am having an such a hard time with this because my ds is so mild.. it's like part of me wants to just ignore all this. BUT then I see here so many cases of where mild went to a crisis situation and well, obviously I don't want to ignore this and obviously I want my son to be well and I just don't think he is even when he's not in an episode... he just doesn't seem well.. I feel like I can see it in him... and obviously at one point things got bad enough that I was able to put the pieces together but really sometimes I do wonder if I am being crazy trying to get to the bottom of something that most people aren't seeing.

[peglem]

I'm glad you're starting to make sense out of it! That's a big job!

 

My daughter's pediatrician is willing to read studies and become educated...he's a gem. But, he needs (especially for PEX/IVIG) specialist confirmation for treatment (okay, he's fudged that a little). We tried a couple of years ago to get the help of an immunologist and a rheumy. The immunologist wasn't much help at all. The rheumy was a tiny bit of help- He said he didn't think it was PANDAS because her ASO/AntiDnase titers were low- he was misinformed- we had TONS of symptom exacerbations w/ +strep cultures. BUT, he was willing to put her on prophylactic antibiotics-which her pediatrician used as confirmation that he could go against protocol and provide for her prophylactically.

 

We had the Cunningham work-up over the summer- shared the results with her pediatrician...who was soooo excited! Now it all makes sense to him. He talked with Dr.s Cunningham and Latimer....once again though, we need those specialists to get PEX and/or IVIG. So tomorrow, I'm going back to the rheumy and Tuesday we see the immunologist....I'm praying sooo hard to find the right words to help them understand. Her pediatrician will do phone consults with both during the appointments, because he says if I tell them, they'll just think I'm crazy! I think he's right about that! I'm trying to be brave!

[ajcire]

I would think a positive throat culture would make thing a heck of a lot easier if the titers are low. Keep in mind, some kids do have setbacks when they are exposed to strep as well w/o being + themself.

 

Out of curiosity, did you take your strep + child in because they were sick or just to rule out strep in the family?

 

 

Vickie, I took my strep positive dd in yesterday because she had 101 fever and said her throat hurt. She gets strep a lot but she always seems to get the classic strep symptoms.... she does not have pandas symptoms. For some reason her rapids always come back negative though so when the dr. noticed that in her chart and saw her throat was red he told me to start her on the antibiotic and if I hadn't heard from the office by Monday to stop it but this way we would have a head start if it was strep. Then today my 2 1/2 year old ds woke up with 102. When the office called to tell me my dd was positive, I told them my little one was sick with fever and they said to bring him in for a culture. So far his is negative. My pandas son had a day trip with my dh so he was not home for this or I would have had him cultured today too. My pandas ds has NEVER had classic strep symptoms. I have brought him in based on behavior or throat clearing when my dd had strep and he has been positive 4 times now.... 3 times I just wanted him checked and one time had pink eye and they checked him and it was strep too.. they said often pink eye and strep go hand in hand. I would think I was crazy too sometimes except that to me the fact that when I guess he has strep based on behavior/throat clearing and take him in and it's positive that should tell them something.

[ajcire]

Peg, Good luck to you!!! It sounds like you have a great ped who really does want to help. I am kinda nervous that the cunningham test will be normal and totally make me doubt what I am so sure.

 

 

 

 

I'm glad you're starting to make sense out of it! That's a big job!

 

My daughter's pediatrician is willing to read studies and become educated...he's a gem. But, he needs (especially for PEX/IVIG) specialist confirmation for treatment (okay, he's fudged that a little). We tried a couple of years ago to get the help of an immunologist and a rheumy. The immunologist wasn't much help at all. The rheumy was a tiny bit of help- He said he didn't think it was PANDAS because her ASO/AntiDnase titers were low- he was misinformed- we had TONS of symptom exacerbations w/ +strep cultures. BUT, he was willing to put her on prophylactic antibiotics-which her pediatrician used as confirmation that he could go against protocol and provide for her prophylactically.

 

We had the Cunningham work-up over the summer- shared the results with her pediatrician...who was soooo excited! Now it all makes sense to him. He talked with Dr.s Cunningham and Latimer....once again though, we need those specialists to get PEX and/or IVIG. So tomorrow, I'm going back to the rheumy and Tuesday we see the immunologist....I'm praying sooo hard to find the right words to help them understand. Her pediatrician will do phone consults with both during the appointments, because he says if I tell them, they'll just think I'm crazy! I think he's right about that! I'm trying to be brave!

[EAMom]

Peglem...did you add your ped to the helpful docs list?

[peglem]

I am kinda nervous that the cunningham test will be normal and totally make me doubt what I am so sure.

You know, I felt the same way when I had my daughter's done...so many, many "professional authority" types have said no, not PANDAS...and she was not in an exacerbation when she was tested (at least not an extreme one- her "baseline" is so high now.) And she had been on phrophylactic abx (apparently not high enough- tested +for strep Sept. 1st)....she tested above the mean for Sydenham's chorea...

[thereishope]

Do you do the basics like change toothbrushes, toothpaste,rinse and spit cups, etc when one had strep? We don't have a "community" rinse and spit cup anymore. Also, perhaps a child in one of their classrooms is the culprit. I wondered that a lot last school year. It was my son's first year in school...preschool. He started exhibiting behavior chnages about a week or so after starting. I bet one of the kids was a carrier or something and they didn't disnifect the classrooms enough. I do not plan on sending my younger daughter to that school. Too many bad memories.

 

 

Today's doctor also suggested that I take my non pandas dd to a pediatric ent to try to get to the route of why she gets so much strep throat (with classic signs..fever and sore throat)... I wish I knew who is passing it to whom.. if my pandas ds has it now I won't know once again if he is getting it first and me not knowing he has it and then passing it or if she is getting it first... not that it really matters I guess.

[faith]

erica,

what did you mean when you stated above that your child does not hve PANDAS symtoms? do you mean right now?

 

 

Faith