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


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We drove up to CT on tuesday, stayed at the DoubleTree, and had our first visit with Dr. B Wed morning. The man is brilliant and I wanted to share some tidbits that may help some parents who haven't been, or can't get there. He was so good at explaining the way this works, looking over our records, etc. We were in his office for 1.5 hrs.

 

* Says that if he "had" to put a number on it, sibling have about a 40% chance of developing PANDAS

* Turns out that dd7, def. pandas, only produces antibodies for 3 out of 14 strains of strep, so her body doesn't even try to protect her from 11 other strains of strep bacteria.

* Says we need to do Igenex b/c she tested present for band Ig23 on quest western blot, so now I'm trying to figure that into my disappearing bank account :lol:

* We are having all family members in the house tested for strep/myco p thru bloodwork.

* She is now taking Zithromax, and Orapred (taper)

* He explained it so well, that the source of the problem is probably in her sinuses, that's why sometimes the strep test is negative. Says he doesn't like the swab....b/c it's only right about 1/2 the time. He also said the "stinky" breath that I've described is from sinus infections....not strep, however the kids probably have strep sitting in their sinuses....that has not been cleared. We are going to find a good ENT for all 3 other children, and also have tonsils and adnoids removed in all 3.

* We are going back in 1 month, and see how things are going, and do some allergy testing.

 

Wanted to update on the visit. Dr. B also says he is now seeing patients come from all over the world, not just the US. So basically I'm lucky I could drive there, and that we live in the same country! Can you imagine if the Dr. that you needed to get to was in India?! Well, I'm off to find a good ENT...(wish me luck, right?)

**For those who have done Igenex, what kind of place did you go to get the blood drawn?

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I am glad to hear that you had a good visit and that you are getting answers for your family. You have been searching for a while and this will be very good for you all.

 

I am a little unclear about the strains of strep. The 14 strep titers are probably strep pneumoniae, which is a bacteria that lives in the back of the throat of most people. Our bodies keep it in check and it generally does not leave that area. However, it can spread to the sinuses or ears and cause infection there. If you child is not producing antibodies to 11/14 types of s. pneumoniae, then that increases the likelihood of sinusitis or otitis media being the source of the infection. This is not the same thing as Group A Beta Hemolytic Strep )GABHS), which is the "strep" of strep throat and the "Strep" that was studied in PANDAS. There is debate as to whether this can also be hiding in the sinuses of some of our kids. So, when Dr. B talked about "strep" in the sinuses, I am wondering if he was referring to the Strep pneumoniae version or the GABHS version. Either way... it is good to get sinuses and allergies checked - they turned out to be the source the infection and inflammation for my son.

 

I wish you well as you navigate through the PANDAS and lyme testing. It must feel so good to have plan to follow!

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Hey... so nice to meet you this week in CT.

 

We had her Igenex labs piggybacked onto the others he ordered and some her Ped here ordered - not sure yet whether there will be a separate draw fee for those or not; we don't have the bill yet.

 

I know we are over 3 hours from you, but we do have an excellent ENT here who did her T/A and is on-board with PANDAS; very compassionate and does very good work... great with kiddos! Dr. Michael Jacobson. Did I forget to give you my email? I'll pm it to you on FB.

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Glad you got to see Dr. B. I have been thinking about it for a while now.

 

I do have a question about removing the tonsils and adenoids in ALL your kids??? Are they symptomatic?? Recurrent strep?? Or is it just in case they are carriers?

 

Thanks,

Wendy

 

Hi Wendy,

The other 3 kids have all had strep as much as my pandas dd, and are also asymptomatic, no fevers or the usual symptoms. They all 4 have the strep issues and sinus issues, so I'm going to go ahead and get the T&A done on everyone. We are going thru a rough episode right now, and it's probably b/c one of the kids had strep/scarlet fever a few weeks ago....so I'm hoping to prevent them from bringing home the strep, and also hoping that if we stop the cycle, maybe they won't all end up pandas? :wacko:

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I am glad to hear that you had a good visit and that you are getting answers for your family. You have been searching for a while and this will be very good for you all.

 

I am a little unclear about the strains of strep. The 14 strep titers are probably strep pneumoniae, which is a bacteria that lives in the back of the throat of most people. Our bodies keep it in check and it generally does not leave that area. However, it can spread to the sinuses or ears and cause infection there. If you child is not producing antibodies to 11/14 types of s. pneumoniae, then that increases the likelihood of sinusitis or otitis media being the source of the infection. This is not the same thing as Group A Beta Hemolytic Strep )GABHS), which is the "strep" of strep throat and the "Strep" that was studied in PANDAS. There is debate as to whether this can also be hiding in the sinuses of some of our kids. So, when Dr. B talked about "strep" in the sinuses, I am wondering if he was referring to the Strep pneumoniae version or the GABHS version. Either way... it is good to get sinuses and allergies checked - they turned out to be the source the infection and inflammation for my son.

 

I wish you well as you navigate through the PANDAS and lyme testing. It must feel so good to have plan to follow!

[/quote

oops, thank you for clearing that up....I have taken in so much information....I don't know if I fully understood that myself, but I do now....and that makes sense. I wrote things down too, but I was so shocked that we were finally there, speaking with someone who knows about this.....that I would have forgotten to breathe....if that was possible. So glad to be on the right path....or any path for that matter. Yay!

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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?

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I wrote things down too, but I was so shocked that we were finally there, speaking with someone who knows about this.....that I would have forgotten to breathe....if that was possible. So glad to be on the right path....or any path for that matter. Yay!

It is great to have a doctor ask you questions that make sense! I think we all feel that way the first time we talk to a PANDAS specialist!

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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.

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I don't know if your kiddo is prone to yeast, but we are seeing Dr. B. and are on a similar protocol as you have described. we are just finishing the orapred taper, and I had my DAN doc call in a pres. for diflucan. My son is showing some signs of improvement overall, but I know yeast is a huge problem for us (stinky breath is sometimes associated with yeast too). Dr. B. said that probiotics should be enough, but we needed something more. Just wanted to give you a heads up before you get too far into the steroid.

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They are testing strep pneumonia titers to look for immune deficiencies. It does not mean that s.pneumonia is thought to be just as much as a cause/trigger for PANDAS than strep...although it is clear that strep is not the only trigger. Because many PANDAS kids (not all of course) have immune deficiencies, PANDAS docs will check out their immune systems. (also helpful in getting IVIG covered fo PANDAS if a deficiency is found) Checking response to the 14 strains of strep. pneumonia is standard practice when checking the immunse system. The doctor most likely feels that since your daughter passes the s. pneumonia titers, her immune system mounts good responses and will most likely mount a good response to group strep A....(ASO and AntiDnanasB titers). That is likely why he/she put that together..makes sense.

 

Faliure to pass the 14 serotypes in the s. pneumonia titers does not mean your child will not mount a response to group strep A. There are many children who have failed the s. pneumonia titers and have SKY high Aso and/or AntiDnaase B titers (group a strep).

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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.

 

I can only tell you that Dr. B was clear with us about s. pneumoniae vs. GABHS.. though he did call it Strep Pneumoniae, which could be confusing. He indicated to us that the low s. pneumoniae titers indicated an increased likelihood of sinus infection, so that is why he then went on to do more sinus evaluation with my son.

 

I wish someone would come up with different names for these since they are different organisms! :wacko:

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