We found the carrier in the family!

[worriedmommy]

Thanks to everyone who has posted on the importance of blood testing in the absence of a positive throat culture.

 

We have been trying to determine if anyone in the family was a strep carrier since last fall. (This was before we had ever heard of PANDAS.) Dh, dd, ds & myself were all cultured. The rapids and 72 hour cultures all came back negative.

 

Dd then had sudden onset of tics, and we were introduced to the possibility of PANDAS. Dr. T. gave his opinion, and agreed that dd has PANDAS. Her Cunningham test also came back at 150, further helping confirm our suspicion.

 

At the same time, we've been getting suspicious of ds4. He's been exhibiting some rage & ocd behaviors. (things dd did in the past and we "wrote off" as toddler behavior.) In the mean time dd came off of Biaxin at the beginning of April and by the 9th of the month was in a major PANDAS exacerbation. We immediately put her on azith, which she is still on. Two days after her exacerbation ds came down with an all over body rash and red throat. I had him cultured and his rapid & culture were both negative. (I was crushed as I was certain he had strep & this attributed to dd's downfall).

 

Anyway ds had his 4 year well child appt last week, and I demanded to have his titers checked. The doc just called to say his ASO is 369, with the normal range for his age being 0-70. His AntiDNase is 346, with the normal range for his age being 0-256. So...looks like he does/did have strep!!!!

 

The doc perscribed 10 days of Keflex. (This is not his regular pediatrician so I didn't argue.) What I want to know is what type of abx should he be on...and for how long???

 

Aghh...I really am in shock right now. It is also really making me revisit my hunch that ds may have PANDAS.

[peglem]

If he's a carrier, its likely intracellular, so I'd go for zith.

[thereishope]

This confuses me. I would think that just because they test negative for strep on the throat swab, but their blood indicates and infection, it does not necessarily make them a carrier. It just means strep is somewhere in their body. So, you will eventually have to retest to see if the numbers change. I don't know the timeline interval for rechecking titers.

 

Because he has strep that is so hidden, I'd probably push for Zith too. But I don't think it means he is necessarily a carrier. Anyone know if I'm right/wrong?

Edited May 5, 2010 by Vickie

[kim]

That's the way I understand it too Vickie. The strep didn't show on throat culture, but could be sinus, ear, etc.

 

Maybe this is helpful Worriedmommy

 

I think symptom improvement with falling titer is the most reliable indicator (?) or maybe it's just symptom improvement with antibiotic use, since titers can stay elevated for quite some time

 

 

http://www.latitudes.org/forums/index.php?...amp;#entry65872

 

Well, sort of. ASO is neutralized by certain lipids. GABHS on the skin does not tend to cause an ASO response as the Streptolycin O is neutralized by the skin.

 

There seems to be some concern in your post about the higher Anti-DNAseB levels. If they are rising then there was likely an infection in the prior 8 weeks. If they are falling then who knows. If they are constant -- no one knows. Only a rising titer is informative.

 

Generally a throat culture is preferable to taking blood titers. Use of blood titers is really to confirm a prior suspected strep infection in the prior 1-8 weeks.

 

Are you concerned that your dh is still positive? The odd are that his titers are falling from a prior infection.

 

Buster

[worriedmommy]

This confuses me. I would think that just because they test negative for strep on the throat swab, but their blood indicates and infection, it does not necessarily make them a carrier. It just means strep is somewhere in their body. So, you will eventually have to retest to see if the numbers change. I don't know the timeline interval for rechecking titers.

 

Because he has strep that is so hidden, I'd probably push for Zith too. But I don't think it means he is necessarily a carrier. Anyone know if I'm right/wrong?

 

 

I see what you all mean. I think I was assuming he was both a carrier & had an active infection in the past few weeks. Hmmm...I just don't know what to think. All of this is really making me question whether his recent behavior coupled with these titer levels is indicative of his having PANDAS too.

[thereishope]

I say watch his behavior and chart it. You can try Ibuprofen too and see if that changes anything.

 

 

This confuses me. I would think that just because they test negative for strep on the throat swab, but their blood indicates and infection, it does not necessarily make them a carrier. It just means strep is somewhere in their body. So, you will eventually have to retest to see if the numbers change. I don't know the timeline interval for rechecking titers.

 

Because he has strep that is so hidden, I'd probably push for Zith too. But I don't think it means he is necessarily a carrier. Anyone know if I'm right/wrong?

 

 

I see what you all mean. I think I was assuming he was both a carrier & had an active infection in the past few weeks. Hmmm...I just don't know what to think. All of this is really making me question whether his recent behavior coupled with these titer levels is indicative of his having PANDAS too.

[ajcire]

I agree... it doesn't sound like he was a carrier..sounds like he had strep that got missed.

[colleenrn]

I believe the status of "carrier" to be misused by many physicians and will eventually be a thing of the past. IMO, if you carry strep, you have strep, it just may be assymptomatic strep. So many docs say the "carrier state is benign". In a PANDAS child it is never benign and I believe that to be true in non-PANDAS people too. I think that when docs see a person testing positive for strep yet there is an absence of "typical" strep symptoms, they label the person as a carrier when in reality they have strep and need to be treated.

 

I would vote for switching to Zithromax given that your child may have had it for a while. Zithromax would be more efective.

Colleen

[worriedmommy]

I believe the status of "carrier" to be misused by many physicians and will eventually be a thing of the past. IMO, if you carry strep, you have strep, it just may be assymptomatic strep. So many docs say the "carrier state is benign". In a PANDAS child it is never benign and I believe that to be true in non-PANDAS people too. I think that when docs see a person testing positive for strep yet there is an absence of "typical" strep symptoms, they label the person as a carrier when in reality they have strep and need to be treated.

 

I would vote for switching to Zithromax given that your child may have had it for a while. Zithromax would be more efective.

Colleen

 

We did switch the Rx to Zithromax. He started it tonight. it is only a 5 day course.

[EAMom]

I believe the status of "carrier" to be misused by many physicians and will eventually be a thing of the past. IMO, if you carry strep, you have strep, it just may be assymptomatic strep. So many docs say the "carrier state is benign". In a PANDAS child it is never benign and I believe that to be true in non-PANDAS people too. I think that when docs see a person testing positive for strep yet there is an absence of "typical" strep symptoms, they label the person as a carrier when in reality they have strep and need to be treated.

 

I would vote for switching to Zithromax given that your child may have had it for a while. Zithromax would be more efective.

Colleen

 

I completely agree with you Colleen.

 

Also, people with assymptomatic strep (aka "carriers") are also contagious (although they tend to be LESS contagious than someone with symptomatic strep)....there is nothing benign about that.

Edited May 6, 2010 by EAMom