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North Carolina (and nearby) connection to PANDAS?


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This really has me worried. I keep seeing that a lot of us have a connection to NC (or SC) and it has me wondering WHY and what the connection may be. After thinking on this the other night as I was going to sleep, one thing really stuck out for me, but I'm not sure if it could be accurate. Is it possible that we got a particular batch of PREVNAR vaccines that were somehow MORE likely to cause the onset of PANDAS?

 

I was reflecting also on something that Diana said to me about herself and EAMOM and how there was an "outbreak" of PANDAS in their area around the same time.

 

Why would this be? If there is an autoimmune component, this should NOT be the case, correct? There would have to be something environmental that a LOT of kids are exposed to (I mean, other than strep alone) that would cause the onset in a particular area at a particular time.

 

Just speculating.... Your thoughts on this???

 

 

FYI- My daughter was vaxed in Concord, NC and was born in 9/2000, so she is 9 yrs old. Just putting that out there to see if there are any similarities w/others that we could piece together.

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This really has me worried. I keep seeing that a lot of us have a connection to NC (or SC) and it has me wondering WHY and what the connection may be. After thinking on this the other night as I was going to sleep, one thing really stuck out for me, but I'm not sure if it could be accurate. Is it possible that we got a particular batch of PREVNAR vaccines that were somehow MORE likely to cause the onset of PANDAS?

 

I was reflecting also on something that Diana said to me about herself and EAMOM and how there was an "outbreak" of PANDAS in their area around the same time.

 

Why would this be? If there is an autoimmune component, this should NOT be the case, correct? There would have to be something environmental that a LOT of kids are exposed to (I mean, other than strep alone) that would cause the onset in a particular area at a particular time.

 

Just speculating.... Your thoughts on this???

 

 

FYI- My daughter was vaxed in Concord, NC and was born in 9/2000, so she is 9 yrs old. Just putting that out there to see if there are any similarities w/others that we could piece together.

 

Pixiesmommy-

 

I have the same thoughts as you regarding a particular batch of Prevnar. My thinking is look at how many kids are around age 9. Prevnar was first introduced in the year 2000. Also, look at the clusters in NC & California. It would be really interesting to see if they all received a batch of vaccine with the same lot number.

 

Shae is only 7 but she had her first signs of Pandas shortly after receiving Prevnar. I've never been one to think that vaccines are bad so I'm surprised by my own line of thinking but they injected her with Streptococcus and if her immune system was naturally compromised already who knows what affect it had on her. I did find a study done that was blasting the FDA for approving Prevnar so quickly and it stated that Prevnar would cause autoimmune illness. Of course I didn't bookmark it.

 

Sam

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This just gave me cold chills. Literally, from my head to my toes. Meg was vaxed in Mooresville NC, born 8/2001, 8 years old, so within a year of you. Surely the Vax would not be distributed geographically? Maybe we need a poll by state? So many of us have moved out of NC, so does that hide a connection? What are our other connections? My Lord. That is so likely not accurate - but completely chilling. I had thought before about a particular strain of strep, but with everyone spread out, that did not make sense. Our family is "vulnerable", we acknowledge that. We have others with OCD. So that component we can check off. But as to what triggered the vulnerablity....

 

This really has me worried. I keep seeing that a lot of us have a connection to NC (or SC) and it has me wondering WHY and what the connection may be. After thinking on this the other night as I was going to sleep, one thing really stuck out for me, but I'm not sure if it could be accurate. Is it possible that we got a particular batch of PREVNAR vaccines that were somehow MORE likely to cause the onset of PANDAS?

 

I was reflecting also on something that Diana said to me about herself and EAMOM and how there was an "outbreak" of PANDAS in their area around the same time.

 

Why would this be? If there is an autoimmune component, this should NOT be the case, correct? There would have to be something environmental that a LOT of kids are exposed to (I mean, other than strep alone) that would cause the onset in a particular area at a particular time.

 

Just speculating.... Your thoughts on this???

 

 

FYI- My daughter was vaxed in Concord, NC and was born in 9/2000, so she is 9 yrs old. Just putting that out there to see if there are any similarities w/others that we could piece together.

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Chills here too....

 

My daughters, born in 8/2001 (8 yrs) and 10/2002 (almost 7 yrs). Both received the vaccine by the age of 2 in Charlotte, NC. I'll have to check their records to see how young the first was given.

 

DD8 has taken the pneumo titers test and failed many of them but the jury is still out on whether that is considered significant for her.

 

Susan

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I dont want to change the thread, but I have a question about the titers (still waiting on our results)....

 

Gtown Infectious Disease doc took titer test on dd. She believes in pandas, but says they don't know exactly what is going on. She felt, that only low pneumococcal titers did not necessarily mean an immune issue. She thought there were not really any results from a group of healthy kids as to what their titers were.

 

Is this true? What do your docs tell you about this?

 

Just trying to understand, in advance of our report (if I ever get it!)

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I dont want to change the thread, but I have a question about the titers (still waiting on our results)....

 

Gtown Infectious Disease doc took titer test on dd. She believes in pandas, but says they don't know exactly what is going on. She felt, that only low pneumococcal titers did not necessarily mean an immune issue. She thought there were not really any results from a group of healthy kids as to what their titers were.

 

Is this true? What do your docs tell you about this?

 

Just trying to understand, in advance of our report (if I ever get it!)

 

From what I've seen, it totally depends on the doctor. The one that took dd's titers said he would not know anything without re-vaccinating her. I'm not sure what our new doc will think. We go back on the 14th of Oct. Some see low titers as a sign of immuno deficency, others need to see certain serotypes low enough, other say it doesn't matter. Fun huh?

 

Susan

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My daughters, born in 8/2001 (8 yrs) and 10/2002 (almost 7 yrs). Both received the vaccine by the age of 2 in Charlotte, NC. I'll have to check their records to see how young the first was given.

 

 

Susan

 

I'm sure my girls had a schedule similar to this... They got their first strep at 16 and 12 months old but started prevnar earlier than this. By the time dd8 was gagging herself and pulling out her hair (18 months?), she had had at least 3 doses of prevnar.

 

"Prevnar is given as a four dose series, starting at two months of age (with a minimum of 6 weeks of age). Subsequent doses are given at age four months and six months of age, with a fourth dose at age 12-15 months (and at least two months after the third dose). It is recommended that all children under age 23 months be given this vaccine. "

 

Susan

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JUST picked up a message from the ID doctor (darn, I missed her call). I had results of IGA and IGG already (normal), doctor said everything, including all titers look good. I will try to get the results in my hands Monday to see if anyone on the forum can help me interpret. She had said she would run pneumococcal titers, along with a few more (mumps? diptheria?) and subclasses....

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Just to balance my earlier comment, I suppose it is just as likely that this is a immunological failure to react to a vaccine - and then a strain of strep that takes advantage of that immunilogical vulnerability. Could that strain be a cluster that they were exposed to early - and lived on for some time. I hate to be weird about it, but I breastfed for some time, and wonder if I was giving her immunity early? And then she started getting ear infections.

 

I will know more if Meg ever does the doggone (yep, I am NC born!!!) blood test. Then I think we can ask if our kids seem to have the same immunilogial vulnerabilities that might be the larger coincidence. Shaesmom, you are done here. Suzan, I know you are doing this soon. I am doing it soon. Anyone else? Would you be willing to fax me the results so we can do a spreadsheet on this? I would put your kids in as A, B, C. Just a thought. Maybe also include all dates that you got the Prevnar vacc's and where - and if you can find out the batch number, include that as well. My Lot numbers are 481-542, 483-164, 484-210, 492-931. Looks like a manu of LED (?).

 

My general thoughts about this before this conversation - that Meg did not process this vaccine well, and her ear infections after I finished b'feeding, may have been a result of exposure to this strain. That is my guess from how many kids here fail multiple titers. I'll be able to think more about this after we get her results back. She has always had an ear infection at the same time as the sudden onset.

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OK. I just need to put my 2 cents in on the topic as I live in the Stanford area only a couple of miles from Diana Polhman, EAMom and several others. I just met Diana for the first time for coffee.... she has been helping us tremendously throughout this process and as you know she just got back from seeing Dr. Cunningham. It seems that Dr. Cunningham believes (hopefully I'm getting this correct) it to be the type of STREP..... STREP PNEUMOCOCCAL 'NOT STREP A'. Apparently, they can test for this form of strep but typically the Hospital needs to be associated with a University were they would have the proper tests for Strep Pneumococcal. AND, the Prevnar is what is suppose to protect them from Strep Pneumococcal. I have an appointment with an immunologist associated with Stanford's Children Hospital and I am going to ask that our son be tested if possible on Oct. 20th.

 

Here is also why.... I've posted this here before but my son's friend just got results from Dr. Cunningham and his score is 147 and will be seeing all of the Dr.'s my son has seen. Dr. K has seen this history and believes my sons friend potentially had Scarlet Fever at the time. But this also places it into the timeframe Diana talks about on Pandas Network for the SF area. Additionally, Dr. K thinks that Kawasaki's 'might' be a presentation of PANDAS.

 

• Novemember 2007 (IMPORTANT HISTORY): In mid Novemember 2007 we had a playdate with a boy named Adrain who had a swollen gland on the left side of his neck the size of a golf ball. Several days later (approximately a week) our son had what looked like pink eye in both eyes and a high fever for 4 or 5 days. Within 24 hours of our son getting better our 5 ½ month old baby boy started showing signs of a similar illness. However, his symptoms seemed to be much worse with extreme restlessness and vomiting even after IV fluids. Within 48 hours of our 5 1/2 month old getting sick he was admitted to the hospital and eventually diagnosed with Kawasaki’s. At the time, I asked if Kawasaki’s was contagious and explained my older sons symptoms. I was told that they didn’t think Kawasaki’s was contagious and it was highly unlikely our other son had Kawasaki’s a week prior. I have recently discovered on 8/27/2009 our sons friend had peeling palms and feet (skin coming off in sheets) with a prior fever at the time of playdate as well as the swollen gland. The peeling palms and feet was not communicated to Adrian‘s Dr. when his mother sought treatment for swollen neck gland. Adrian was eventually diagnosed with a resilient strep and treated with several courses of antibiotics, weak immune system, sinitis and irritated adenoids that were eventually pulled June of 2008. Our sons were playmates and continued to be in contact throughout 2007 - 2008. Our sons friend, seems to have gotten much better but still suffers from headaches, daily joint pain, weak immune system, extreme shyness, seperation anxiety, chapped lips with cold sores and is repeating Kindergarden. Our son has often complained of joint pain and has had chronic chapped/peeling lips ever since illness.

 

-Wendy

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OK. I just need to put my 2 cents in on the topic as I live in the Stanford area only a couple of miles from Diana Polhman, EAMom and several others. I just met Diana for the first time for coffee.... she has been helping us tremendously throughout this process and as you know she just got back from seeing Dr. Cunningham. It seems that Dr. Cunningham believes (hopefully I'm getting this correct) it to be the type of STREP..... STREP PNEUMOCOCCAL 'NOT STREP A'. Apparently, they can test for this form of strep but typically the Hospital needs to be associated with a University were they would have the proper tests for Strep Pneumococcal. AND, the Prevnar is what is suppose to protect them from Strep Pneumococcal. I have an appointment with an immunologist associated with Stanford's Children Hospital and I am going to ask that our son be tested if possible on Oct. 20th.

 

Just to clarify what Wendy has said above:

 

The Pneumococcal Titers test that so many of the kids are failing is for Streptococcus Pneumonae which is what Prevnar and Pneumovax vaccinate against. Visit the Prevnar website and click on the dancing Pneumo guy--you will get a great explanation of what exactly Prevnar is vaccinating against.

 

Sam

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JUST picked up a message from the ID doctor (darn, I missed her call). I had results of IGA and IGG already (normal), doctor said everything, including all titers look good. I will try to get the results in my hands Monday to see if anyone on the forum can help me interpret. She had said she would run pneumococcal titers, along with a few more (mumps? diptheria?) and subclasses....

 

 

I'm confused-did she already run the pneumococcal titers and other tests or do those still need to be done? I'd be glad to help you interpret them.

 

Sam

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Just to balance my earlier comment, I suppose it is just as likely that this is a immunological failure to react to a vaccine - and then a strain of strep that takes advantage of that immunilogical vulnerability. Could that strain be a cluster that they were exposed to early - and lived on for some time. I hate to be weird about it, but I breastfed for some time, and wonder if I was giving her immunity early? And then she started getting ear infections.

 

I will know more if Meg ever does the doggone (yep, I am NC born!!!) blood test. Then I think we can ask if our kids seem to have the same immunilogial vulnerabilities that might be the larger coincidence. Shaesmom, you are done here. Suzan, I know you are doing this soon. I am doing it soon. Anyone else? Would you be willing to fax me the results so we can do a spreadsheet on this? I would put your kids in as A, B, C. Just a thought. Maybe also include all dates that you got the Prevnar vacc's and where - and if you can find out the batch number, include that as well. My Lot numbers are 481-542, 483-164, 484-210, 492-931. Looks like a manu of LED (?).

 

My general thoughts about this before this conversation - that Meg did not process this vaccine well, and her ear infections after I finished b'feeding, may have been a result of exposure to this strain. That is my guess from how many kids here fail multiple titers. I'll be able to think more about this after we get her results back. She has always had an ear infection at the same time as the sudden onset.

 

How did you find the lot numbers??

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