Parents with high ASO

[matis_mom]

My husband and I have high ASO (mine is around 250, I'm not sure what his is). They put my on Augmentin 875 bid, and he is on Cefuroxime 250 bid... They only gave us 10 days each. He had already had a 10 day course of Pen VK and they retested after 6 weeks, still high, so now they are trying Cefuroxime. Since ds is supposed to have plasmapheresis soon (got delayed because of insurance), we called and asked that they extend the prescription for 30 days, since dh will be the one going to the hospital. I am thinking I need a longer one myself too.

 

So I am wondering if you all could share what antibiotic/for how long worked for you. I don't want to overdo the antibiotics, but at the same time we cannot afford to stop, retest, and start again all the time.

 

Now I'm thinking maybe this is the reason ds has not made full recovery. Maybe dh and I were the ones reinfecting everyone, even though neither one of us ever tested positive on rapids or cultures... Oh, how I wish there was a definite test for this!

[JAG10]

My husband and I have high ASO (mine is around 250, I'm not sure what his is). They put my on Augmentin 875 bid, and he is on Cefuroxime 250 bid... They only gave us 10 days each. He had already had a 10 day course of Pen VK and they retested after 6 weeks, still high, so now they are trying Cefuroxime. Since ds is supposed to have plasmapheresis soon (got delayed because of insurance), we called and asked that they extend the prescription for 30 days, since dh will be the one going to the hospital. I am thinking I need a longer one myself too.

 

So I am wondering if you all could share what antibiotic/for how long worked for you. I don't want to overdo the antibiotics, but at the same time we cannot afford to stop, retest, and start again all the time.

 

Now I'm thinking maybe this is the reason ds has not made full recovery. Maybe dh and I were the ones reinfecting everyone, even though neither one of us ever tested positive on rapids or cultures... Oh, how I wish there was a definite test for this!

 

Forgive me if you've already posted this, but what prompted you to run blood tests on all your children, your spouse and yourself? I just cannot get over how many posts there are of parents with elevated strep titers! Please also share if you and your husband had any symptoms at all.

 

I saw my ophthalmologist this morning and asked him about pink eye as it is the only thing I can think of as a possibility for myself. He said most pinkeye is viral.

[matis_mom]

Forgive me if you've already posted this, but what prompted you to run blood tests on all your children, your spouse and yourself? I just cannot get over how many posts there are of parents with elevated strep titers! Please also share if you and your husband had any symptoms at all.

 

I saw my ophthalmologist this morning and asked him about pink eye as it is the only thing I can think of as a possibility for myself. He said most pinkeye is viral.

My son was almost 100% recovered with just antibiotics and steroids, and then we had strep 4 different times since then. It's insane! And with each re-exposure, he flares up and then settles back down, but never back to where he was at the end of the first steroid burst. So, we are trying to get him plasmapheresis. Dr. L said, "The only way it will NOT help him is if he gets re-exposed too soon." So, I've been on this impossible quest to keep everyone strep-free.

Took all the kids while well, except ds was showing symptoms: three positive on the rapid, two with ear infections. Everyone on antibiotics. Check a couple of weeks later, all clear.

Took everyone in again while well: one positive on the culture. Treated as a carrier. Checked, all clear.

My husband and I always get tested when the kids are sick, never a positive, but both of us have elevated ASO.

So at this point, I feel like I can never be sure we are strep free, it's very frustrating.

Just this Monday I took everyone in (I was so sure someone had strep!), all clear, and then on Tuesday I tested positive on the rapid! I have no symptoms at all, neither does my husband, and except for one of my daughters that actually got a sore throat and fever once, no one shows any symptoms.

So, from reading on this forum about other families' experiences, I thought it was about time to test everyone. DS will never get well if he is constantly being exposed to strep at home.

I am also thinking this runs in families and if anyone has strep hidden somewhere, I want to find out and treat it.

 

Also, about pink-eye, my son started with the obsessive hand-washing one summer when we were visiting my sister and all her kids had pink-eye. So yes, most of it may be viral, but it can be strep too!

Edited July 24, 2010 by mati's mom

[sptcmom]

Mati's mom- Dr K distinctly said that DS could have flare ups when exposed to viral infections, vaccinations and of course strep is a given. So, pink eye by itself could certainly cause flare ups. We had two kids on Ds's bus with swine flu and it was really bad for DS with flare ups.

[matis_mom]

Mati's mom- Dr K distinctly said that DS could have flare ups when exposed to viral infections, vaccinations and of course strep is a given. So, pink eye by itself could certainly cause flare ups. We had two kids on Ds's bus with swine flu and it was really bad for DS with flare ups.

Good point! Could have been viral.

However, My niece had to be hospitalized because her eye was bleeding (there is a particular name for that kind of conjuctivitis, I forget what it was), so I'm pretty sure theirs was bacterial.

[sf_mom]

My husband had elevated ASO (283) and Anti-DNase-B (680). We put him on a 40 day course of Augmentin XR and retested his ASO (244) and Anti-DNase-B (680). Since the titers only moved slightly and were declining he was switched to Azithromycin to protect our son. Most recently he has been on Omnicef/Rifampin to theoretically break carrier state and will be retesting his titers in August.

 

Hopefully, that helps.

 

-Wendy

Edited July 24, 2010 by SF Mom

[Worried_Dad]

You may have already seen this thread, but I'll point you at one post toward the end:

 

http://www.latitudes.org/forums/index.php?showtopic=7430&view=findpost&p=72489

 

Bottom line: our entire family has elevated ASO titers that (at least per the labs and docs) indicate a strong positive for recent GAS infection, despite consistently negative throat cultures. We all (other than PANDAS son, who remains on "Saving Sammy" dose of augmentin XR) just finished 4 weeks of clindamycin, in the hope that it will clear all of us at the same time so we don't reinfect each other. Dr. K told me via e-mail that we absolutely can't afford to consider lowering our son's XR dose until we're sure the rest of the family is clear of strep.

 

And - per the post above - a month of "standard dose" zithromax (250 mg daily) did not appear to clear my strep infection, because my ASO titer actually rose by 140 points in the 2 months following that abx treatment. I'm praying that the month of clindamycin will succeed where the low-dose zith failed. (Higher dose of zith might have succeeded... but I couldn't convince the local doc to do that. Sigh....)

 

Don't yet know whether this was successful for me, my wife, or our other 2 (non-PANDAS) kids though. We have to wait 2 months before going in to get ASO titers retested. I'll make sure to post the results!

[matis_mom]

You may have already seen this thread, but I'll point you at one post toward the end:

 

http://www.latitudes.org/forums/index.php?showtopic=7430&view=findpost&p=72489

 

Bottom line: our entire family has elevated ASO titers that (at least per the labs and docs) indicate a strong positive for recent GAS infection, despite consistently negative throat cultures. We all (other than PANDAS son, who remains on "Saving Sammy" dose of augmentin XR) just finished 4 weeks of clindamycin, in the hope that it will clear all of us at the same time so we don't reinfect each other. Dr. K told me via e-mail that we absolutely can't afford to consider lowering our son's XR dose until we're sure the rest of the family is clear of strep.

 

And - per the post above - a month of "standard dose" zithromax (250 mg daily) did not appear to clear my strep infection, because my ASO titer actually rose by 140 points in the 2 months following that abx treatment. I'm praying that the month of clindamycin will succeed where the low-dose zith failed. (Higher dose of zith might have succeeded... but I couldn't convince the local doc to do that. Sigh....)

 

Don't yet know whether this was successful for me, my wife, or our other 2 (non-PANDAS) kids though. We have to wait 2 months before going in to get ASO titers retested. I'll make sure to post the results!

Thanks worrieddad! It was your original post that prompted me to test titers... Our son too is on "Saving Sammy" dose, and the one time we tried to switch Zithromax 250 he flared right away. I really wish I could find a go-getter doc who would treat our family as a whole! At least my husbands GP is familiar with PANDAS and hopefully we'll get to the bottom of this, but from your experience I just have to resign myself to the fact that it is going to take some time.

So sad to think we are the ones making him sick!

[7upMom]

Due to my son backsliding, we got our families titers done also. We did our home and then his fathers household also. For a total of 13 people who did blood-draws. We just got our results back last week and out of the 13 people tested 9 ( all four of the adults and 5 children) are positive for strep with high titers and not a one of us are sick. Both households including stepsiblings that are not even bloodrelated. So the doc here contacted Dr K who says 2 weeks antibiotic and then retest blood and throat swabs again. Ugh no wonder he was not getting better ): but now maybe the steroid burst he is starting next week will help!!

So frustrating!!

[sf_mom]

I just wanted to add that when I last consulted with Dr. K on June 30th the first question out of his mouth was.................. FIRST, how are your husband's titers?

 

Dr. K is definitely starting to understand that sometimes there is a strep problem in the household.

[colleenrn]

We recently did a lot of bloodwork with Dr. T and all four of my kids have normal ASO titers, BUT I have an ASO of 396. I am curently on a month of Zithromax 750mg and I will have myself retested- not sure when I should though. My husband still needs to have his titers done.

Colleen

[matis_mom]

Due to my son backsliding, we got our families titers done also. We did our home and then his fathers household also. For a total of 13 people who did blood-draws. We just got our results back last week and out of the 13 people tested 9 ( all four of the adults and 5 children) are positive for strep with high titers and not a one of us are sick. Both households including stepsiblings that are not even bloodrelated. So the doc here contacted Dr K who says 2 weeks antibiotic and then retest blood and throat swabs again. Ugh no wonder he was not getting better ): but now maybe the steroid burst he is starting next week will help!!

So frustrating!!

13! And I was feeling sorry for myself here trying to deal with 10 people and a dog! Good luck with the steroid burst, it worked great for ds the first time.

[matis_mom]

Thanks all for the replies. Seeing what is working for others and since Augmentin did not work for me (actually made me worse), do you all think I should ask them to switch dh from Cefuroxime 250 bid to something else? Is that strong enough?

[7upMom]

Due to my son backsliding, we got our families titers done also. We did our home and then his fathers household also. For a total of 13 people who did blood-draws. We just got our results back last week and out of the 13 people tested 9 ( all four of the adults and 5 children) are positive for strep with high titers and not a one of us are sick. Both households including stepsiblings that are not even bloodrelated. So the doc here contacted Dr K who says 2 weeks antibiotic and then retest blood and throat swabs again. Ugh no wonder he was not getting better ): but now maybe the steroid burst he is starting next week will help!!

So frustrating!!

13! And I was feeling sorry for myself here trying to deal with 10 people and a dog! Good luck with the steroid burst, it worked great for ds the first time.

 

 

Well, we don't have 13 in our home, we have 9 and a dog also lol, but we tested 13 because that included his dad's household ( we are divorced) So you have 10? in your house? wow- your hands are really full, just one more and I might break down and cry lol. My husband is a 100% disabled vet from Iraq so between VA appts and PANDAS I can't believe I am still standing at times. Lots of hugs to you though for keeping it all together its a tough job!!!

 

How long did your steroid results last? Did you do the burst before you knew about the family strep problem or during treating it? Dr K just talked with my doc today and says no steroid burst until we are done with the 2 wk antibiotics, problem I see: what if its not eradicated in two weeks, then how much longer do we wait for steroid burst ): I am praying it works good- so its really good to hear others say it has for them. I wish I understood this family strep thing better! Just went out and bought UV lightholders for toothbrushes (:

[matis_mom]

Well, we don't have 13 in our home, we have 9 and a dog also lol, but we tested 13 because that included his dad's household ( we are divorced) So you have 10? in your house? wow- your hands are really full, just one more and I might break down and cry lol. My husband is a 100% disabled vet from Iraq so between VA appts and PANDAS I can't believe I am still standing at times. Lots of hugs to you though for keeping it all together its a tough job!!!

 

How long did your steroid results last? Did you do the burst before you knew about the family strep problem or during treating it? Dr K just talked with my doc today and says no steroid burst until we are done with the 2 wk antibiotics, problem I see: what if its not eradicated in two weeks, then how much longer do we wait for steroid burst ): I am praying it works good- so its really good to hear others say it has for them. I wish I understood this family strep thing better! Just went out and bought UV lightholders for toothbrushes (:

Yes, 8 kids plus us. I do feel like this thing is taking over my life! We are thinking of changing our family name to "the Von Strep Family"

About the steroid burst, we did not know back then we as a family had a strep problem. He was 99% better at the end of the month, and a few days after he was done my daughter had impetigo! He slid back but not as bad as he was at the beginning. After that we tried two more times, but never saw as much of an improvement, and I believe it was because we just kept getting strep.

What on earth are UV lightholders?

Edited July 27, 2010 by mati's mom