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How can I detect strep and treat it with NO symptoms or positive tests


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I know I have asked this before, but that was before the newest events in our house hold. How can you know when your asymptomatic children get strep?

 

10 year old with PANDAS and (9 year old brother and 8 year old brother):

 

Dr. L asked about the brothers, we mention the 8 year old getting head tics and the 9 year old getting HSP all at the same time as the 10 year old got PANDAS. They were all mildly sick with a one day fever and no "strep like complaints"(One year ago).

 

She asked for their titers to be tested and check to see if T & A surgery could be a possibility (and culture the tonsils when they come out).

 

Well I have run the kids into the doctor for countless rapid and 72 hour strep tests over the coarse of this year and they are always negative. Well the 9 year old's titers came back almost 800 and the 8 year old with head tics, almost 500. The 9 year old was treated for strep after he had HSP (that's how we knew he had step) but it has been almost a year...so maybe that would explain a bit of the high titers..? The 8 year old has had no signs of strep at all! He has had MANY rapid and then followed by 72 hour strep tests...ALWAYS negative. Actually, he never even appeared to be sick in any way: no rashes, runny nose, sinus issues, fever, sore throat, head ache...ONLY ran him in for Strep tests when someone in his class had it and I didn't want him to expose the son with PANDAS. Tonsils came out last week and the removed tonsils cultured positive for strep! How long has he had strep? He had a strep swab before surgery.

 

Two weeks of antibiotics and the head tics, vocal tic and hyperness are no longer there....what does this mean? Will they come back now that the antibiotics have ended yesterday or was it the strep in the tonsils causing this? How will I ever know if they have strep without a single sign or positive strep culture? Kathy emailed today to say that the 3 boy's Cunningham test results were done and sent to Dr. L. We asked for a copy to be sent to us...maybe we will know tomorrow if I should now add our family to the many that have more than one child with this illness. Prayers please, Linda

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I am really glad to see your post- as I am wondering the same thing. My 14 yo has the same situation-- high titers but he has had positive culture (neg quick). our fam doc recommedend Infec Disease for our son. I am thinking he needs T&A- we see our Pandas Doc today actually and will verify. we he was very little he had "kissing tonsils" and were recommended to hvae them removed- but we chickened out --i do wonder if he has been carrying strep for YEARS and now I have 2 other children suffering greatly from PANDAS) I think I may have a 3rd affected as well- I am the throws of confirming that now.

Should I take him every few weeks to be checked? I will try to update what the ID doc tells me in a few days.

I have one question- did you have difficulty getting the t& A set up for your boys without sypmtomatic strep issues? my sons tonisls are large and pitted and I am sure brewing with something- but still-- he is never "sick"

I will keep you updated and wish I had answers for you!

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Just because the antibiotcis are done does not mean the tics, hyperactivity, etc will return. However, it does raise a raise flag that child is PANDAS as well. I would report all of this back to Dr L. She may want to see your other child or she (or even you ped or ENT if on board) may want to put that child on longer antibiotics and/or a prophylactic.

 

Now that the tonsils are removed (if that was the only hiding place for strep), hopefully you won't have these problems resurface. If you see the tics or any other questionable symptoms or behaviors return, still take him in for a strep test. Maybe you'd start getting some positives now that the tonsils are gone. However, let's hope the tics and behaviors just don't return!

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I am really glad to see your post- as I am wondering the same thing. My 14 yo has the same situation-- high titers but he has had positive culture (neg quick). our fam doc recommedend Infec Disease for our son. I am thinking he needs T&A- we see our Pandas Doc today actually and will verify. we he was very little he had "kissing tonsils" and were recommended to hvae them removed- but we chickened out --i do wonder if he has been carrying strep for YEARS and now I have 2 other children suffering greatly from PANDAS) I think I may have a 3rd affected as well- I am the throws of confirming that now.

Should I take him every few weeks to be checked? I will try to update what the ID doc tells me in a few days.

I have one question- did you have difficulty getting the t& A set up for your boys without sypmtomatic strep issues? my sons tonisls are large and pitted and I am sure brewing with something- but still-- he is never "sick"

I will keep you updated and wish I had answers for you!

 

 

 

 

 

 

 

 

 

Emuls,

 

I did not have trouble getting the T & A surgery because they did have big tonsils and when they had tubes in their ears years ago, the ENT said that they will probably need to come out some day.

 

On another note...the ENT was nice and did not tell me that he was not a "believer", but did say that he did not see the purpose for culturing the tonsils and that he would have shown strep somewhere. However, he did agree to do it...we go Thursday for a post op appointment...I wonder what he will say now. Remember that he never showed positive for strep, so I guess "running" them in for strep tests all the time was still not good enough. I did ask why he had high titers (why was he producing antibodies to fight strep) if he hasn't had strep. He said, "You have questions for which we have no answers." Just pointing this out in case your ID doctor tries to tell you the same things. Good Luck to you and if you think the tonsils will someday need to come out, better now than later. My 21 year old niece just had emergency tonsil removal surgery and recovery was not easy.

 

 

 

 

Vickie,

 

Our Cunningham tests are ready and were sent to Dr. L. I wonder where you go from there? Will she email, call us, we call her, or do we need to fly to see her to get the results. We asked Kathy to send us a copy. I guess we will know soon. Our pediatrician is on board to a point, but he will probably not give antibiotics for that son because he does not understand the "big picture" of all this. But he is very nice, smart, & caring man and here in Texas....he's all I've got.

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Same questions here re: my 11yo son. I know he had strep multiple times before we finally had his T&A out. He suffered from many sinus infection too. There was a time when even I ended up with strep because he had it and I had my T&A out when I was a child b/c I had multiple strep and ear infections. He probably had strep for months until we finally figured it out.

 

We had my son's strep titers pulled in May to see if they were high but they were OK. We didn't think he had strep then but wanted to see their numbers. Lots of kids in his class have had strep since the beginning of school and even one of the aides ended up with scarlet fever. He hasn't been nearly as sick as he used to be before his T&A surgery. But...i think he has PANDAS. He just hasn not been himself for a long time.

 

So, my question is...even with no T&As and negative swab tests, can he still have strep and we not know? My son has regressive autism post immunizations so it isn't like he can verbalize his problems yet his behaviors have been off for quite some time.

Wanting to recover my son!

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Same questions here re: my 11yo son. I know he had strep multiple times before we finally had his T&A out. He suffered from many sinus infection too. There was a time when even I ended up with strep because he had it and I had my T&A out when I was a child b/c I had multiple strep and ear infections. He probably had strep for months until we finally figured it out.

 

We had my son's strep titers pulled in May to see if they were high but they were OK. We didn't think he had strep then but wanted to see their numbers. Lots of kids in his class have had strep since the beginning of school and even one of the aides ended up with scarlet fever. He hasn't been nearly as sick as he used to be before his T&A surgery. But...i think he has PANDAS. He just hasn not been himself for a long time.

 

So, my question is...even with no T&As and negative swab tests, can he still have strep and we not know? My son has regressive autism post immunizations so it isn't like he can verbalize his problems yet his behaviors have been off for quite some time.

Wanting to recover my son!

 

 

 

I'm sorry, I don't remember all of your "history". Do you go to a DAN doctor? They can be very good about finding other issues that are pieces to these illness puzzles, especially the post immunizations problems.

 

Don't give up in finding answers! Blessings, Linda

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Yes. Strep can occur in the throat, gut, sinuses, ear infections, anal, vaginal, on the skin. Sinus infections can be very hard to detect. Sometimes simply looking in the nose (like a ped does) would not detect it. For some, the only way the saw it was through a MRI. Also, even if titers are not raised, it doe NOT rule out infection.

 

Have you seen seen the flowchart for some other suggestions?

PANDAS Flowchart

http://www.latitudes.org/forums/index.php?showtopic=6688&hl=

 

 

 

So, my question is...even with no T&As and negative swab tests, can he still have strep and we not know? My son has regressive autism post immunizations so it isn't like he can verbalize his problems yet his behaviors have been off for quite some time.

Wanting to recover my son!

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