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Oh, man, I'm just sick about this.

 

For the past few years, my wife and I have (of course, like everybody on here) focused our energies on our PANDAS son's health challenges. To be cautious, we've all (me, wife, 2 non-PANDAS sons) repeatedly had strep tests done (the rapid throat culture, the longer 48-72 hour cultures) and all have been negative.

 

Well, I've been having some minor health issues for 4 years now: increasingly bothersome congestion, drainage, persistent cough. I've been told again and again by local docs that it "could not be strep." Several told me it had to be GERD or allergies. Now that our PANDAS son is doing better, I got around to seeing an allergist. All allergy tests negative, GERD test negative (no response to reflux meds). Allergist was baffled.

 

Last week, I finally had an appointment with the new local DAN doc who's taken our PANDAS son on as a patient. I did the standard food sensitivity testing, but also (just out of paranoia) asked them to run an ASO titer on me. They called this morning: my ASO is 303, well into the positive range for an adult.

 

ARRRRRGGGGHHHH!!!!

 

I feel so awful now. This could explain why my son improved dramatically after IVIG round 1 but got sick again, why he's never gotten all the way back to baseline. My instincts told me to get titers run previously... but our local family doc always stared at me like I was nuts and just recommended the throat culture.

 

Still waiting to find out what the next step is. DAN doc's nurse said she wanted me to come in for weekly bicillin injections, but I'm allergic to penicillin. I suggested at least a month of high-dose zithromax as an alternative, and she promised to ask the doctor.

 

Any other parents tested positive for strep? Am I likely a carrier? Is zithro the best way to go?

 

I have an e-mail into Dr. K asking these questions. I'll post his response. Now I'm determined to have the whole family tested for ASO, despite our family doc's skepticism. Oh, if only I had demanded this a couple of years ago!!!

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Wow!

 

I vote for Azith. for a month. Clindamycin is also supposed to be good for carriers.

 

Doesn't it get tiring having to ask docs for stuff? And having them say no? And then you were right all along? grrrr.

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I second that...WOW!

 

I just forwarded you post to my husband. He, too has had problems with congestion, drainage, etc. for the past few years. Treated it as a sinus infection with Augmentin and it didn't get better. Man, I'll have to strong arm him into getting a blood test. He's wimpy about that stuff.

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Our family:

 

Husband: ASO: 283 Anti-DNase-B: 680 Treated Augmentin XR 2000 m.g. for 40 days and will retest titers in a week

 

Mine: Negative but I had also been on antibiotics for UTI, etc. since 2007 timeframe

 

Niece #1: ASO: 280 Anti-DNase-B: 340 Treated Augmentin 875 m.g. twice daily for one month and will retest 30 days post antibiotic treatment

 

Niece #2: ASO: 473, Anti-DNase-B: 480 Treated Augmentin 875 m.g. twice daily for one month and will retest 30 days post antibiotic treatment

 

My parents: ASO and Anti-DNAse-B: Negative

 

As you know all our children were exposed to a child in the ARF phase and a week later our older son became very ill, we then had the Thanksgiving Holiday.... my entire family was visiting and our older son was still recovering from being ill NO ANTIBIOTICS so possibly active strep. The day everyone left our house our younger son became extremely ill, hospitalized and diagnosed with Kawasaki's. We have opted to TEST everyone's ASO and Anti-DNAse-B who was visiting during that time period. There was no documented cases of strep in my nieces medical records in the last two years since exposure. We are still waiting for my husband's side of the family results.

 

We are so grateful that we also decided to do this even though we were 'also' a little late to the game. We had this done post our older son's second IVIG.

 

-Wendy

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Wow! This is HUGE!! I'm so happy for you that you've found such an important piece of the puzzle for your family. And thank you for reminding everyone here how important this is. I vote for being agressive with the antibiotics - don't let the docs talk you out of that. Maybe it makes sense for you to take whatever has worked for your son, since it must be the same strain?? And please don't be too hard on yourself for waiting to check, I don't think anyone of us have taken this part seriously enough.

 

It took us a few months to get around to doing it, but we've all been tested now. My husband and I were both normal range for ASO and anti-DNase B (no siblings in our family), but we're so glad we did it. It gives us peace of mind.

 

Please EVERYONE - get your entire family's titers checked!!!

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Seriously...an hour ago got labs back...had hubby checked because he was doing other blood work...no MP

ASO 317......he's the bloody carrier.....he and my ds are the ones who get the strep...son neg on all titer but pos mp...maybe that's why recovery SLOW

got to run...always freegin something

question his dnase is 240 but it didnt' say if in or out of range....anyone know....trying to get abx...labs done with endocrenaologtiet

 

 

Oh, man, I'm just sick about this.

 

For the past few years, my wife and I have (of course, like everybody on here) focused our energies on our PANDAS son's health challenges. To be cautious, we've all (me, wife, 2 non-PANDAS sons) repeatedly had strep tests done (the rapid throat culture, the longer 48-72 hour cultures) and all have been negative.

 

Well, I've been having some minor health issues for 4 years now: increasingly bothersome congestion, drainage, persistent cough. I've been told again and again by local docs that it "could not be strep." Several told me it had to be GERD or allergies. Now that our PANDAS son is doing better, I got around to seeing an allergist. All allergy tests negative, GERD test negative (no response to reflux meds). Allergist was baffled.

 

Last week, I finally had an appointment with the new local DAN doc who's taken our PANDAS son on as a patient. I did the standard food sensitivity testing, but also (just out of paranoia) asked them to run an ASO titer on me. They called this morning: my ASO is 303, well into the positive range for an adult.

 

ARRRRRGGGGHHHH!!!!

 

I feel so awful now. This could explain why my son improved dramatically after IVIG round 1 but got sick again, why he's never gotten all the way back to baseline. My instincts told me to get titers run previously... but our local family doc always stared at me like I was nuts and just recommended the throat culture.

 

Still waiting to find out what the next step is. DAN doc's nurse said she wanted me to come in for weekly bicillin injections, but I'm allergic to penicillin. I suggested at least a month of high-dose zithromax as an alternative, and she promised to ask the doctor.

 

Any other parents tested positive for strep? Am I likely a carrier? Is zithro the best way to go?

 

I have an e-mail into Dr. K asking these questions. I'll post his response. Now I'm determined to have the whole family tested for ASO, despite our family doc's skepticism. Oh, if only I had demanded this a couple of years ago!!!

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Ok so here is question. i want dh on abx asap.....what would be saving sammy dose for a 6ft 195lb man...endo gone for weekend...going to take labs to our walkin were we go about every 2 weeks....DS on meds but if hubby sick, were in a big circle j.

help much appreciated!!!

 

 

 

Seriously...an hour ago got labs back...had hubby checked because he was doing other blood work...no MP

ASO 317......he's the bloody carrier.....he and my ds are the ones who get the strep...son neg on all titer but pos mp...maybe that's why recovery SLOW

got to run...always freegin something

question his dnase is 240 but it didnt' say if in or out of range....anyone know....trying to get abx...labs done with endocrenaologtiet

 

 

Oh, man, I'm just sick about this.

 

For the past few years, my wife and I have (of course, like everybody on here) focused our energies on our PANDAS son's health challenges. To be cautious, we've all (me, wife, 2 non-PANDAS sons) repeatedly had strep tests done (the rapid throat culture, the longer 48-72 hour cultures) and all have been negative.

 

Well, I've been having some minor health issues for 4 years now: increasingly bothersome congestion, drainage, persistent cough. I've been told again and again by local docs that it "could not be strep." Several told me it had to be GERD or allergies. Now that our PANDAS son is doing better, I got around to seeing an allergist. All allergy tests negative, GERD test negative (no response to reflux meds). Allergist was baffled.

 

Last week, I finally had an appointment with the new local DAN doc who's taken our PANDAS son on as a patient. I did the standard food sensitivity testing, but also (just out of paranoia) asked them to run an ASO titer on me. They called this morning: my ASO is 303, well into the positive range for an adult.

 

ARRRRRGGGGHHHH!!!!

 

I feel so awful now. This could explain why my son improved dramatically after IVIG round 1 but got sick again, why he's never gotten all the way back to baseline. My instincts told me to get titers run previously... but our local family doc always stared at me like I was nuts and just recommended the throat culture.

 

Still waiting to find out what the next step is. DAN doc's nurse said she wanted me to come in for weekly bicillin injections, but I'm allergic to penicillin. I suggested at least a month of high-dose zithromax as an alternative, and she promised to ask the doctor.

 

Any other parents tested positive for strep? Am I likely a carrier? Is zithro the best way to go?

 

I have an e-mail into Dr. K asking these questions. I'll post his response. Now I'm determined to have the whole family tested for ASO, despite our family doc's skepticism. Oh, if only I had demanded this a couple of years ago!!!

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Ok so here is question. i want dh on abx asap.....what would be saving sammy dose for a 6ft 195lb man...endo gone for weekend...going to take labs to our walkin were we go about every 2 weeks....DS on meds but if hubby sick, were in a big circle j.

help much appreciated!!!

The standard adult daily dose of Augmentin XR is 4,000 mg. per day, or 2,000 mg. (2 tablets) twice each day. That's per the GSK web site info as well as my uncle, a pharmacist with the National Health Service.

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FYI, Dr. K did reply that zithromax would be a good choice. He didn't specify a dose or duration.

 

 

Dear Worried Dad & All--

 

We take the cake for a situation like what this thread is about. We have Dr. K saying "*^$%$#^^*, I have NEVER seen anything like this before!!" Dr. T said about the same thing with this recent line-up of strep antibody results. Are you ready?? We had the family all run in Dec. at my INSISTENCE despite negative strep cultures. Hold on to your pants--I think we need a prize!!! Our PANDAS son started spiraling 2 1/2 months post IVIG after encouraging improvement. We postponed his second one scheduled for this week, untill we unravel this. Our dd15 was dxed by Dr, K in Dec when symptoms of adol PANDAS really came to a head. He put her on HD Augmentin. Total abx for about 6 weeks. Symptoms started creeping & became apparent that "we're backkkk!!" Dr. K said run the titers on her. I said do the whole family. WEeee! (These were run at Mayo) <_<:angry::blink:

 

DS11 pandas IVIG oct09 hd Augmentin since then pre IVIG 780/1360 post IVIG 2 1/2mo 378/580 5 1/2mo post IVIG 378/5440!!

DD15 adol pandas dx dec 09 6 weeks abx dec09 752/5400 3/09 752/7800

dd13 dec 09 neg/177 3/09 neg/960

dh dec09 189/1920 3/09 189/7860

myself dec09 756/1920 3/09 752/5440

 

We are at a loss. Our GP has a call into some specialists. Not sure what will be next. We were all on Augmentin HD for a month in Dec. Dr. K seemed to think that would do it. Not sure of his thoughts now. He's not saying much! I think Dr. K has had some situations like Worried Dad and ours recently. I hope something is being gleaned. In both instances we have had to push for titer checks in teh absence of positive cultures and we had an IVIG probably fail because we returned our kid to a strep factory.

 

Dawn

 

PS--No, I didn't miss a decimal point in those numbers. You are welcome to throw out ideas, b/c we certainly are baffling the docs. I've hesitated posting this, thinking you all would think I was nuts!!!

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Dawn,

 

WOW!!!!!!!!!!!!!!

 

Did the docs make any comment about the ASO remaining constant for all of you but DNase-b skyrocketing? Does that mean anything specifically??

 

 

 

 

Dear Worried Dad & All--

 

We take the cake for a situation like what this thread is about. We have Dr. K saying "*^$%$#^^*, I have NEVER seen anything like this before!!" Dr. T said about the same thing with this recent line-up of strep antibody results. Are you ready?? We had the family all run in Dec. at my INSISTENCE despite negative strep cultures. Hold on to your pants--I think we need a prize!!! Our PANDAS son started spiraling 2 1/2 months post IVIG after encouraging improvement. We postponed his second one scheduled for this week, untill we unravel this. Our dd15 was dxed by Dr, K in Dec when symptoms of adol PANDAS really came to a head. He put her on HD Augmentin. Total abx for about 6 weeks. Symptoms started creeping & became apparent that "we're backkkk!!" Dr. K said run the titers on her. I said do the whole family. WEeee! (These were run at Mayo) <_<:angry::blink:

 

DS11 pandas IVIG oct09 hd Augmentin since then pre IVIG 780/1360 post IVIG 2 1/2mo 378/580 5 1/2mo post IVIG 378/5440!!

DD15 adol pandas dx dec 09 6 weeks abx dec09 752/5400 3/09 752/7800

dd13 dec 09 neg/177 3/09 neg/960

dh dec09 189/1920 3/09 189/7860

myself dec09 756/1920 3/09 752/5440

 

We are at a loss. Our GP has a call into some specialists. Not sure what will be next. We were all on Augmentin HD for a month in Dec. Dr. K seemed to think that would do it. Not sure of his thoughts now. He's not saying much! I think Dr. K has had some situations like Worried Dad and ours recently. I hope something is being gleaned. In both instances we have had to push for titer checks in teh absence of positive cultures and we had an IVIG probably fail because we returned our kid to a strep factory.

 

Dawn

 

PS--No, I didn't miss a decimal point in those numbers. You are welcome to throw out ideas, b/c we certainly are baffling the docs. I've hesitated posting this, thinking you all would think I was nuts!!!

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Dawn:

 

I am so sorry!!! I can only imagine how stressed you all must feel right now.

 

I know this will create controversy, but have you considered contacting the nay sayer, Dr. Kaplan? I think he is a strep specialist.

 

At this point, you need all the opinions you can get.

 

Can anything other than strep cause high Anti DNASE B?

 

Have you thought of switching antibiotics from Augmentin to Azithromycin for the whole family?

 

Elizabeth

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FYI, Dr. K did reply that zithromax would be a good choice. He didn't specify a dose or duration.

 

 

Dear Worried Dad & All--

 

We take the cake for a situation like what this thread is about. We have Dr. K saying "*^$%$#^^*, I have NEVER seen anything like this before!!" Dr. T said about the same thing with this recent line-up of strep antibody results. Are you ready?? We had the family all run in Dec. at my INSISTENCE despite negative strep cultures. Hold on to your pants--I think we need a prize!!! Our PANDAS son started spiraling 2 1/2 months post IVIG after encouraging improvement. We postponed his second one scheduled for this week, untill we unravel this. Our dd15 was dxed by Dr, K in Dec when symptoms of adol PANDAS really came to a head. He put her on HD Augmentin. Total abx for about 6 weeks. Symptoms started creeping & became apparent that "we're backkkk!!" Dr. K said run the titers on her. I said do the whole family. WEeee! (These were run at Mayo) :blink: :blink: :blink:

 

DS11 pandas IVIG oct09 hd Augmentin since then pre IVIG 780/1360 post IVIG 2 1/2mo 378/580 5 1/2mo post IVIG 378/5440!!

DD15 adol pandas dx dec 09 6 weeks abx dec09 752/5400 3/09 752/7800

dd13 dec 09 neg/177 3/09 neg/960

dh dec09 189/1920 3/09 189/7860

myself dec09 756/1920 3/09 752/5440

 

We are at a loss. Our GP has a call into some specialists. Not sure what will be next. We were all on Augmentin HD for a month in Dec. Dr. K seemed to think that would do it. Not sure of his thoughts now. He's not saying much! I think Dr. K has had some situations like Worried Dad and ours recently. I hope something is being gleaned. In both instances we have had to push for titer checks in teh absence of positive cultures and we had an IVIG probably fail because we returned our kid to a strep factory.

 

Dawn

 

PS--No, I didn't miss a decimal point in those numbers. You are welcome to throw out ideas, b/c we certainly are baffling the docs. I've hesitated posting this, thinking you all would think I was nuts!!!

 

Hi Dawn,

 

Is there anybody or anything that the family has frequent exposure to that could possibly be the untreated strep carrier responsible for constantly reexposing all of you to strep such as somebody your daughter babysits for or your dog? A serious process of elimination might help you find a culprit. Good luck and sorry for family's struggles. Alex

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