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North Carolina (and nearby) connection to PANDAS?


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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!)

 

My dd had normal levels of all IG's and only failed the pneumococcal titers and she now has the dx of an immune deficiency and receives monthly IVIG based on this dx. I have "spoken" with others on the PID forums who also have normal IG's and failed the titers test that also have the dx of an immune deficiency.

 

What is key to remember here is that normal IG numbers mean ONLY that the children's body makes what is considered a normal number of immunoglobulins. The big question is do those IG's actually DO the work they were made for?? The pneumococcal titers blood work demonstrates whether or not the immunoglobulins actually go to work or if they are lazy. It goes back to my analogy in another thread about the dog and the thief. Fail the pneumococcal titers test and it means your IG's are broken-worthless-don't do a damn thing-total losers. Make sense?

 

And yes, some doctors aren't as proactive about the titers as some are.

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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??

 

I have ordered copies of all records from all doctors, and made a spreadsheet of everything that I can think of or track down that is pertinent. In one column, I have environmental stuff (breastfeeding, moves, etc), then another few columns for illnesses & any treatment given, then a column for OCD onset, scale (how bad) and treatments). This helped me get some testing (immunilogical). I swear after 2, she was sick all winter for the next few years. Then she stops getting sick, but gets OCD (well she still gets ear infections, but rarely and almost always coinciding with OCD sudden onset). First 2 years, she breastfeeds & gets 4 Prevnar shots. 3rd year, she gets sick all winter and then OCD, which went away quickly. I'm not sure how long they get immunities from mom. I should look that up. Or, does the shot last a while for her, but not protect her after it wears off. We need a scientist on this board!

 

I got a vaccine record back in the records from her Ped, and I believe they are required by law to note the Lot #, in case there is an issue. It's a one page summary - you should be able to get this from your pediatrician. I am not a anti-vaccine parent, by the way - but I did always make sure she was healthy before getting them - I was trying to strike a balance you know?

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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

 

 

THANKS SAM... you are right, it is 'STREPTOCOCCUS PNEUMONAE' that I hope to have my son tested for and potentially explains my sons low ASO Titers of 244 and negative Anti-DNase-B Titers but PANDAS positive. AND maybe why some kids don't show signs of strep or test positive?

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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

 

 

THANKS SAM... you are right, it is 'STREPTOCOCCUS PNEUMONAE' that I hope to have my son tested for and potentially explains my sons low ASO Titers of 244 and negative Anti-DNase-B Titers but PANDAS positive. AND maybe why some kids don't show signs of strep or test positive?

 

 

To me it would make perfect sense that if our kids are failing the streptococcus pneumonae test because their bodies CAN'T fight off those strains that it is likely their bodies also cannot fight off strep A.

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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

 

Ok, so if so (and wouldn't it be nice to know) then maybe re-vaxing make sense and then testing again to see how long it holds. This is sureal conversation. Anyone know an Infectious Disease specialist?

 

 

THANKS SAM... you are right, it is 'STREPTOCOCCUS PNEUMONAE' that I hope to have my son tested for and potentially explains my sons low ASO Titers of 244 and negative Anti-DNase-B Titers but PANDAS positive. AND maybe why some kids don't show signs of strep or test positive?

 

 

To me it would make perfect sense that if our kids are failing the streptococcus pneumonae test because their bodies CAN'T fight off those strains that it is likely their bodies also cannot fight off strep A.

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[

 

Ok, so if so (and wouldn't it be nice to know) then maybe re-vaxing make sense and then testing again to see how long it holds. This is sureal conversation. Anyone know an Infectious Disease specialist?

 

 

 

 

Do you really want to revax her with streptococcus??

 

Let's look at the history of Primary Immune Deficiency's. Many people are in their 30's & 40's when they are diagnosed. They have never received a vaccine for streptococcus pneumonae--have any of you ever had the Pneumovax vaccine-I haven't. So the first thing the doctor is going to do if they fail the Pneumococcal titers test during the blood work is give them the vaccine and retest three weeks later. If they now make titers--it is assumed that the immunoglobulins will fight those infections. If they fail--possible dx of CVID.

 

Our children are among the first generation who have been given a vaccine for the streptococcus pneumonae during the first years of their life. Many Immunologists may still have the old school thinking of vax and retest. Is it really necessary for those kids who have already been vaxed--four times?????

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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 (?).

.

 

You know I'm up for that. I'll see about the lot numbers, maybe they will be sent with the history to Dr. O'Connor. Maybe we can include a little history like what type of infections they were prone too since you mention ear infections. My girls were prone to ear, sinus and chest infections. I can't wait to see how many documented strep infections they had. I don't think it's as many as I think I remember.

 

Susan

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Andrew was born 1-11-02 in Canton, OH. He received all his vaccines in Canton.(stark county)

I think I reported a lot number as a bad batch to our ped office after his shots at 1 yr old Jan.-03. He got sick one week after with strep and tics and fevers. I am also interested in geographic areas. I know of a few oher kids in the sama area, the same age with PANDAS OCD.

Back to wanting to know geographical areas. My son was born and given vaccines in Cincinnati, OH (Anderson Township to be exact). Born Sept 26, 2003.

 

Also, if you call your peds' office, they do keep track of the lot # of the vaccines given.

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  • 3 weeks later...

we moved to NC 6 years ago...and Alex received the majortiy of his vaccines on Long Island..except for the 4-6 year of OPV/IPV, MMR, and DTP/DTaP...and his last Varivax booster he received this past Feb...I have his entire record in front of me prior to the last chicken pox booster...and he never received Prevnar...it seems he received Hib at 2 months, 4 months, and 6 months...

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I think that the Prevnar connection is a very valid hypothesis, especially given the age of our children and the explosiveness of this disease, and I, too, believe it was rushed to market without proper testing. I live in CT, so I am not as sure that is was a particular lot # of the vaccine, but rather the vaccine itself and the vulnerability of the blood-brain barrier in a percentage of these babies/toddlers. I think it may be a culprit is the rise of autism/developmental issues/PDDnos/tics/OCD/Pandas, etc., that our elementary schools are plagued with and is on the rise.

 

There is some connection. You guys are awesome. Let's keep digging.

 

coco

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Just curious here,..what about kids who were born after year 2000? (born in '99) I don't see Prevnar on my son's vax record, those are blank. Is that only for infants? would they have given that at an older age if he got it? (1 or 2 yrs. old). again, that box is blank on my child's records so assuming he didn't get it? does this mean anything? Does this mean he is probably not immune to the pneumonoccol?

 

 

Thanks

Faith

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Just curious here,..what about kids who were born after year 2000? (born in '99) I don't see Prevnar on my son's vax record, those are blank. Is that only for infants? would they have given that at an older age if he got it? (1 or 2 yrs. old). again, that box is blank on my child's records so assuming he didn't get it? does this mean anything? Does this mean he is probably not immune to the pneumonoccol?

 

 

Thanks

Faith

 

It is my understanding that prevnar came out in 2000 and was not administered before that year. I don't know if they gave a different vaccine for this before then.....

 

Susan

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I am so sorry I have not replied earlier to this post. My other son had pneumonia (probably strep pneumonia) and he was in the hospital. My son Carter is 8 1/2 and had the prevnar vaccine in Charlotte, NC. I will look up the dates and Lot # today. Dr. O'Connor wants him to be re-vaccinated and get IVIG if he fails. I don't feel good at all about re-giving that vaccine. What are the rest of you doing?

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