Relatives with high ASOs

[Debbie1]

Recently, we had some extended family members blood tested for strep titers because my two pandas children consistently react when we are around them. Exposure to these relatives have put my children into exacerbations that have lasted for months. Blood test results on these relatives revealed extremely elevated ASOs - some in the 700 and 800 range. Our pandas doctors have told us that they are either carriers or have chronic infections that have not cleared. Their doctors are telling them the numbers are meaningless - they should do nothing since they are asymptomatic.

 

This morning I received an email from a relative which contained the following link. I just don't know how to explain what is happening to my kids any more than I already have - and I am not sure the best way to respond to this one. Any suggestions???

 

http://www.entman.com/AskDrSpectorStrepCarrier.html

Edited February 14, 2011 by Debbie1

[SarahJane]

In the article, it's mentioned that the strep doesn't cause any problems for the family...that's not the case with your family. And it's a case of child being a carrier not giving strep to adults...adults are not as susceptible to strep as kids are (tho' some do still get it). I am behind you 100% in doing what YOU know is best for your children. That really should be enough response for your family members. I'd maybe write a list of symptoms your children experience with exposure to these relatives, and see if they choose to put them thru that. If they do, then I'd keep them away based on that answer alone. And as far as why they can go to school, it could be that they're lucky enough to be in classes without any strep carriers & where the other kids mostly stay healthy. (Wondering if they're at public or private school.) Anyway, you know best and know PANDAS better than they do because you are directly affected. Maybe print out some more PANDAS stuff to give them (as I'm assuming you've been trying to educate them & have already given them some materials). Whew.

[amyjoy]

that was really intuitive of you to ask to have them tested in the first place.

i'm sure there are all kinds of carriers and infections out there in the schools, and its a dilemma to know what to do. the people who suffer are the kids with weak or overloaded immune systems, like our kids, who are extra susceptible.

that doctor's advice in he column was so vague and non-committal. It was like a circular nothing of saying that its controversial at best, in other words, he had no idea how to respond. it falls through the cracks of knowledge in the medical system.

[amyjoy]

that was really intuitive of you to ask to have them tested in the first place.

i'm sure there are all kinds of carriers and infections out there in the schools, and its a dilemma to know what to do. the people who suffer are the kids with weak or overloaded immune systems, like our kids, who are extra susceptible.

that doctor's advice in he column was so vague and non-committal. It was like a circular nothing of saying that its controversial at best, in other words, he had no idea how to respond. it falls through the cracks of knowledge in the medical system.

[amyjoy]

that was really intuitive of you to ask to have them tested in the first place.

i'm sure there are all kinds of carriers and infections out there in the schools, and its a dilemma to know what to do. the people who suffer are the kids with weak or overloaded immune systems, like our kids, who are extra susceptible.

that doctor's advice in he column was so vague and non-committal. It was like a circular nothing of saying that its controversial at best, in other words, he had no idea how to respond. it falls through the cracks of knowledge in the medical system.

[amyjoy]

sorry for multi-answer - my computer had some connectivity problem

[Ozimum]

"...most doctors agree with your pediatrician that she should not pose any problem for other HEALTHY children at school..."

 

There's the salient point...that word 'healthy'! Strep isn't a problem for healthy people but what does it do for people who are obviously not 'healthy'?! Do we smoke in front of people with throat and lung cancer? Do we take a dose of flu to an old people's home? Do we give a peanut butter sandwich to a kid who is allergic to peanuts? I'm sure there are more arguments like that...

I sure hope you can get this through to your relatives. Good luck!

Edited February 15, 2011 by Ozimum

[matis_mom]

Recently, we had some extended family members blood tested for strep titers because my two pandas children consistently react when we are around them. Exposure to these relatives have put my children into exacerbations that have lasted for months. Blood test results on these relatives revealed extremely elevated ASOs - some in the 700 and 800 range. Our pandas doctors have told us that they are either carriers or have chronic infections that have not cleared. Their doctors are telling them the numbers are meaningless - they should do nothing since they are asymptomatic.

 

This morning I received an email from a relative which contained the following link. I just don't know how to explain what is happening to my kids any more than I already have - and I am not sure the best way to respond to this one. Any suggestions???

 

http://www.entman.com/AskDrSpectorStrepCarrier.html

What I've heard is "the carrier does not to be treated unless they are in contact with someome who is immuno-compromised." Usually they are referring to someone who has cancer or something like that and cannot afford to be exposed to extra stuff. Your children ARE IMMUNO-COMPROMISED. Their immune system over-reacts to strep.

Another "line" I use a lot is to just have people see all you've been through, what you are putting your own children through. I used to be very anti-antibiotic, but now, it's a risk-benefit analysis: taking a course of antibiotics (or a lot more in our case) can save my children a whole lot of suffering. So just try to make them see that. Even if they don't think they have anything, what can it hurt to just do a course and see if the antibodies go down?

 

About their doctors telling them it's "no big deal", it just depends who you see. My original GP said no, you do not need to be treated if you have no symptoms (my ASO was 250). After a few months of that, I changed doctors and the new doc said, "yes, by all means, we need to treat you." After that I also saw an ID doctor, who was also concerned and said we need to take your tonsils out and keep treating until it comes down. So here I am, months later, I got my tonsils out, my ASO is still high, and I still have to go and re-check and re-treat. Now, it's no fun being on abxs, but I think it's more than worth the sacrifice.

 

We need to find a good article that supports this latter view. Sometimes people need to see things in black-and-white or they will not listen to just plain common sense and experience. I mean, you have already been through this, and clearly make the connection between exposure to those relatives and a PANDAS flare-up... what more do they need???

[Guest pandas16]

Have you checked your child's titers for strep? Is it possible that he caught strep from your relative? I've mentioned before that I have PANDAS and if I am exposed to strep, it only lasts while I am by the exposure and it's not really that serious. Never lasts more than a week. I certainly feel a flare, but it by no means lasts 3 months. That seems impossible. Once the trigger is gone, the immune response dies down too- especially if the child isn't even sick. Maybe your child caught strep & titers didn't rise?