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Want to Share About Visit w/ Dr. B on Wed.


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We would be in that category, P. Mom

 

Failed 13 of 14 serotypes, twice and sky high titers before IVIG, no history of a positive swab or culture whatsoever.

 

I like to think of it like this....It's not that the army has no bullets, but that they are confused and disorganized; shooting anything and everything including their own command center.

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Kim-

 

yes the 14 strep pneumo titers are based on having antibodies to strep pneumonae (not The strep throat bacteria) due to previous vaccination with prevnar or pneumovax.

 

It seems like everyone that goes to Dr B comes away with the impression this means your child cannot fight strep (as in strep throat). Is this what he is saying or implying? Can anyone shed light on this?

 

 

I am THINKING that he says strep pneumonia and the parents are thinking strep (as in group a) because of the "strep" in strep pneumonia. I can't imagine he is telling them this is their child's inability to fight off group A strep......being an immunologist, he HAS to know better. I think it is misunderstanding on the parents part 'cause we don't always know better. I hear this a lot actually (not just from Dr. B's patients)...parents thinking that the strep pneumonia titers are related to strep throat somehow...as mentioned, 2 totally different bacterias. There is no vaccine for group a strep.

 

 

We may be getting it wrong but I can confirm that "he" is saying that our children are not producing antibodies to strep. "He" appears to be using the 14 strep p panel to confirm. My son had the 14 panel results going into our visit in October. "He" diagnosed him with active strep, prescribed 30 days abx and had him retested for the 14 panel step p at the end of those thirty days. The copy of the results we got had hand written notation "post." We have not had a follow up but based on my jumping to conclusions perhaps, count me as one of those who came away believing the same. I see your point though and frankly I was confused by what I was reading on line about the 14 serotypes and how this played out. In the meantime, he has diagnosed CVID and recommended IVIG (which insurance is currently denying).

 

On an interesting tangent, we spoke with the Rogers Institute in Wisconsin this week to get a feel for their OCD program (intensive in-patient therapy). It will be interesting if insurance would be okay approving that at $700+/day for 45 days without giving IVIG a chance.....

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We may be getting it wrong but I can confirm that "he" is saying that our children are not producing antibodies to strep. "He" appears to be using the 14 strep p panel to confirm. My son had the 14 panel results going into our visit in October. "He" diagnosed him with active strep, prescribed 30 days abx and had him retested for the 14 panel step p at the end of those thirty days. The copy of the results we got had hand written notation "post." We have not had a follow up but based on my jumping to conclusions perhaps, count me as one of those who came away believing the same. I see your point though and frankly I was confused by what I was reading on line about the 14 serotypes and how this played out. In the meantime, he has diagnosed CVID and recommended IVIG (which insurance is currently denying).

 

On an interesting tangent, we spoke with the Rogers Institute in Wisconsin this week to get a feel for their OCD program (intensive in-patient therapy). It will be interesting if insurance would be okay approving that at $700+/day for 45 days without giving IVIG a chance.....

 

Bill - this is very interesting to me. Did your son have elevated ASO and / or DNASE B, and did he retest for those as well?

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We may be getting it wrong but I can confirm that "he" is saying that our children are not producing antibodies to strep. "He" appears to be using the 14 strep p panel to confirm. My son had the 14 panel results going into our visit in October. "He" diagnosed him with active strep, prescribed 30 days abx and had him retested for the 14 panel step p at the end of those thirty days. The copy of the results we got had hand written notation "post." We have not had a follow up but based on my jumping to conclusions perhaps, count me as one of those who came away believing the same. I see your point though and frankly I was confused by what I was reading on line about the 14 serotypes and how this played out. In the meantime, he has diagnosed CVID and recommended IVIG (which insurance is currently denying).

 

On an interesting tangent, we spoke with the Rogers Institute in Wisconsin this week to get a feel for their OCD program (intensive in-patient therapy). It will be interesting if insurance would be okay approving that at $700+/day for 45 days without giving IVIG a chance.....

 

Bill - this is very interesting to me. Did your son have elevated ASO and / or DNASE B, and did he retest for those as well?

 

 

He did when all of this started some two years ago long before Dr. B. entered the picture. The ASO and DNASE B were retested early October but for some reason, Dr. B.'s office has not provided a copy though I've asked for it multiple times. I'm pretty sure that we will be back up there before Spring is out; I will not leave without a copy.

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well, Bill... I cannot say that I fully understand your situation. I would think that the diagnosis with strep was based on elevated ASO/DNASE B results or it was a clinical impression based on your son's symptoms and the assumption that your child did NOT have elevated ASO/DNASE B results because he cannot mount a response (make enough antibodies) in general, as evidenced by his low level of s. pneumoniae titers (antibodies). I will be interested to hear what happens in the spring. Also - i am now requesting docs to put "copy to patient" on all our bloodwork. I have a big file I keep it all in. That way I can have my questions ready before we talk.

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well, Bill... I cannot say that I fully understand your situation. I would think that the diagnosis with strep was based on elevated ASO/DNASE B results or it was a clinical impression based on your son's symptoms and the assumption that your child did NOT have elevated ASO/DNASE B results because he cannot mount a response (make enough antibodies) in general, as evidenced by his low level of s. pneumoniae titers (antibodies). I will be interested to hear what happens in the spring. Also - i am now requesting docs to put "copy to patient" on all our bloodwork. I have a big file I keep it all in. That way I can have my questions ready before we talk.

 

 

Well - I can guarantee you I don't fully understand it! :D

 

Some doctors have said that watching ASO/DNASE titers isn't all its cracked up to be either in that they are more indicative of past infections/response. Sometimes these stay high for months after an infection even in folks without all of this going on. The other thing I've heard is that it's not that PANDAS kids are not mounting a response, its that the wrong antibodies are produced and/or are just attacking the wrong things (like the brain). Of course, that does not fully jive with what he said (not producing antibodies to strep...)

 

As to how the strep was diagnosed - this is the part that makes me nervous ---- by sight. He stated that he could tell there was a strep infection in the nasal cavity by the way the sinus membrane looked. Now whether he was 100% sure or he has seen so much that he was sure, don't know. I didn't roll into CT and get to sleep until 1:30 that morning so can't say I was at my sharpest. :o

 

As to copies, yes we request everything and have been for some time. Not sure why this one test result has been problematic.

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How exactly did he know there was strep in the sinus'?

 

As to how the strep was diagnosed - this is the part that makes me nervous ---- by sight. He stated that he could tell there was a strep infection in the nasal cavity by the way the sinus membrane looked. Now whether he was 100% sure or he has seen so much that he was sure, don't know. I didn't roll into CT and get to sleep until 1:30 that morning so can't say I was at my sharpest. :o

 

My son had no symptoms of strep. In fact, he has rarely been sick at all in the last several years. Probably supports the theory that in at least some of these kids the immune system is hyper active if not attacking the wrong things???

 

bill

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How exactly did he know there was strep in the sinus'?

 

As to how the strep was diagnosed - this is the part that makes me nervous ---- by sight. He stated that he could tell there was a strep infection in the nasal cavity by the way the sinus membrane looked. Now whether he was 100% sure or he has seen so much that he was sure, don't know. I didn't roll into CT and get to sleep until 1:30 that morning so can't say I was at my sharpest. :o

 

My son had no symptoms of strep. In fact, he has rarely been sick at all in the last several years. Probably supports the theory that in at least some of these kids the immune system is hyper active if not attacking the wrong things???

 

bill

 

I had this same thing on Monday with Dr. B. He told me son had an infection and could tell by looking in his nose. The next day we went to regular appt. with family dr. who was eager to hear about Dr.B's visit and he too wanted to know how he knew there was an infection. He couldn't see anything in the nose but said throat had lots of post nasal drip. It did make me think for a bit since Dr. B. barely looked at son and I know he didn't look in his mouth at all.

I did like Dr. B. but guess I wan't used to no real exam of the child.

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How exactly did he know there was strep in the sinus'?

 

As to how the strep was diagnosed - this is the part that makes me nervous ---- by sight. He stated that he could tell there was a strep infection in the nasal cavity by the way the sinus membrane looked. Now whether he was 100% sure or he has seen so much that he was sure, don't know. I didn't roll into CT and get to sleep until 1:30 that morning so can't say I was at my sharpest. :o

 

My son had no symptoms of strep. In fact, he has rarely been sick at all in the last several years. Probably supports the theory that in at least some of these kids the immune system is hyper active if not attacking the wrong things???

 

bill

 

I had this same thing on Monday with Dr. B. He told me son had an infection and could tell by looking in his nose. The next day we went to regular appt. with family dr. who was eager to hear about Dr.B's visit and he too wanted to know how he knew there was an infection. He couldn't see anything in the nose but said throat had lots of post nasal drip. It did make me think for a bit since Dr. B. barely looked at son and I know he didn't look in his mouth at all.

I did like Dr. B. but guess I wan't used to no real exam of the child.

 

Ok... so let me get this straight... is he looking in the nose saying "it looks like an infection" or is he looking in the nose saying "I can see strep in the nose"... because I am thinking those are two different things and I've heard both from folks who have gone to him on various posts.

 

I did not have the same experience, but that may have been because I had 13 years of doctors diagnosing sinusitis in my son, so I was really ready to hear that he had low strep pneumoniae titers and we really don't know but there could be group A strep in his sinuses.

 

I can tell you that I can take my son to 3 different doctors in one week and one will say he is fine - leave it alone - just a little postnasal drip.... one will say he has inflammation and irritation from allergies - no antibiotics just use antihistimines... and one will say the post nasal drip and inflammation is from a sinus infection and antihistmines will make it worse and he needs an antibiotic. It is really crazy.

 

Also, some will diagnose sinus infection using very sophisticated probes and a head lamp while the next doctor (who is eqally qualified) will look up there with the regular otoscope and say "there is no way to tell for sure without a CT scan".

 

So.. I guess I would not think it odd for a doctor to look up a child's nose and say "it looks like an infection and based on your lab work it may be strep" or "based on your lab work it is probably strep pneumoniae"....

 

But... I would think it odd to hear "I can see strep in his nose".

 

I hope that makes sense... and I hope if anyone reads this before going to any doctor they will ask questions.

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How exactly did he know there was strep in the sinus'?

 

As to how the strep was diagnosed - this is the part that makes me nervous ---- by sight. He stated that he could tell there was a strep infection in the nasal cavity by the way the sinus membrane looked. Now whether he was 100% sure or he has seen so much that he was sure, don't know. I didn't roll into CT and get to sleep until 1:30 that morning so can't say I was at my sharpest. :o

 

My son had no symptoms of strep. In fact, he has rarely been sick at all in the last several years. Probably supports the theory that in at least some of these kids the immune system is hyper active if not attacking the wrong things???

 

bill

 

I had this same thing on Monday with Dr. B. He told me son had an infection and could tell by looking in his nose. The next day we went to regular appt. with family dr. who was eager to hear about Dr.B's visit and he too wanted to know how he knew there was an infection. He couldn't see anything in the nose but said throat had lots of post nasal drip. It did make me think for a bit since Dr. B. barely looked at son and I know he didn't look in his mouth at all.

I did like Dr. B. but guess I wan't used to no real exam of the child.

 

Ok... so let me get this straight... is he looking in the nose saying "it looks like an infection" or is he looking in the nose saying "I can see strep in the nose"... because I am thinking those are two different things and I've heard both from folks who have gone to him on various posts.

 

I did not have the same experience, but that may have been because I had 13 years of doctors diagnosing sinusitis in my son, so I was really ready to hear that he had low strep pneumoniae titers and we really don't know but there could be group A strep in his sinuses.

 

I can tell you that I can take my son to 3 different doctors in one week and one will say he is fine - leave it alone - just a little postnasal drip.... one will say he has inflammation and irritation from allergies - no antibiotics just use antihistimines... and one will say the post nasal drip and inflammation is from a sinus infection and antihistmines will make it worse and he needs an antibiotic. It is really crazy.

 

Also, some will diagnose sinus infection using very sophisticated probes and a head lamp while the next doctor (who is eqally qualified) will look up there with the regular otoscope and say "there is no way to tell for sure without a CT scan".

 

So.. I guess I would not think it odd for a doctor to look up a child's nose and say "it looks like an infection and based on your lab work it may be strep" or "based on your lab work it is probably strep pneumoniae"....

 

But... I would think it odd to hear "I can see strep in his nose".

 

I hope that makes sense... and I hope if anyone reads this before going to any doctor they will ask questions.

 

Makes perfect sense. He looked up his nose (normal thingy used) and stated "He has an active strep infection in his sinuses." I asked "How do you know?" He stated "I can see it." I said, "He was just at the doctors and they didn't see anything." He stated "Most doctors are not trained to be able to see it." Okay - I'm paraphrasing since clearly my memory isn't that good (October) but that's the essence of the conversation.

 

And yes, I'm skeptical. Perhaps what he meant was I see inflammation and given your son's symptoms, along with the 10,000 blood test results in hand, it's probably strep.

 

bill

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How exactly did he know there was strep in the sinus'?

 

As to how the strep was diagnosed - this is the part that makes me nervous ---- by sight. He stated that he could tell there was a strep infection in the nasal cavity by the way the sinus membrane looked. Now whether he was 100% sure or he has seen so much that he was sure, don't know. I didn't roll into CT and get to sleep until 1:30 that morning so can't say I was at my sharpest. :o

 

My son had no symptoms of strep. In fact, he has rarely been sick at all in the last several years. Probably supports the theory that in at least some of these kids the immune system is hyper active if not attacking the wrong things???

 

bill

 

I had this same thing on Monday with Dr. B. He told me son had an infection and could tell by looking in his nose. The next day we went to regular appt. with family dr. who was eager to hear about Dr.B's visit and he too wanted to know how he knew there was an infection. He couldn't see anything in the nose but said throat had lots of post nasal drip. It did make me think for a bit since Dr. B. barely looked at son and I know he didn't look in his mouth at all.

I did like Dr. B. but guess I wan't used to no real exam of the child.

 

Ok... so let me get this straight... is he looking in the nose saying "it looks like an infection" or is he looking in the nose saying "I can see strep in the nose"... because I am thinking those are two different things and I've heard both from folks who have gone to him on various posts.

 

I did not have the same experience, but that may have been because I had 13 years of doctors diagnosing sinusitis in my son, so I was really ready to hear that he had low strep pneumoniae titers and we really don't know but there could be group A strep in his sinuses.

 

I can tell you that I can take my son to 3 different doctors in one week and one will say he is fine - leave it alone - just a little postnasal drip.... one will say he has inflammation and irritation from allergies - no antibiotics just use antihistimines... and one will say the post nasal drip and inflammation is from a sinus infection and antihistmines will make it worse and he needs an antibiotic. It is really crazy.

 

Also, some will diagnose sinus infection using very sophisticated probes and a head lamp while the next doctor (who is eqally qualified) will look up there with the regular otoscope and say "there is no way to tell for sure without a CT scan".

 

So.. I guess I would not think it odd for a doctor to look up a child's nose and say "it looks like an infection and based on your lab work it may be strep" or "based on your lab work it is probably strep pneumoniae"....

 

But... I would think it odd to hear "I can see strep in his nose".

 

I hope that makes sense... and I hope if anyone reads this before going to any doctor they will ask questions.

 

Makes perfect sense. He looked up his nose (normal thingy used) and stated "He has an active strep infection in his sinuses." I asked "How do you know?" He stated "I can see it." I said, "He was just at the doctors and they didn't see anything." He stated "Most doctors are not trained to be able to see it." Okay - I'm paraphrasing since clearly my memory isn't that good (October) but that's the essence of the conversation.

 

And yes, I'm skeptical. Perhaps what he meant was I see inflammation and given your son's symptoms, along with the 10,000 blood test results in hand, it's probably strep.

 

bill

 

Thanks, Bill - I am sure your memory is accurate and you are not the first to post this... It just seems odd to me! I can't wait to hear about the next appointment!

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Is there any way one of Dr. B's current patients could call the office Monday and ask for a quick phone question....ask him HOW he can be certain by looking in the nose that it is strep? OR how about someone who JUST saw him and had him say this, run their child to a Minute Clinic or local doc and ask for a swab of the nasal cavity?? I am really, really curious about this, as we were considering the trip to Dr. B. But between this diagnosing strep in everybody's nose, as well as the strep pneumo. titers relating to strep A discussion, I am now weary :wacko:

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