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IGG subclasses and pneumococcal titers


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11 replies to this topic

#1 kg5123

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Posted 08 September 2009 - 12:31 PM

My suspected 15-year-old PANDAS son has his IGG and other immune functions tested.
His IGG was found to be slightly lower than a reference range.

More problematic were pneumococcal titer results. 12 out of 14 serotypes for the son's pneumococcal titers were almost zero,
meaning, according to the son's doctor, that the son has no ability to fight off strep infections as he is not capable of producing antibodies to the 12 serotypes. This left me puzzled. If he has no ability to produce antibodies to strep, then how it is possible for his basal ganglia to be attacked via antibody cross reaction? How can we explain the stated linkage between his PANDAS symptoms, tics and OCD, and this pneumococal thing?

I hope to get comments from anyone versed in this field.


KG5123


#2 sf_mom

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Posted 08 September 2009 - 01:08 PM

My son also failed 10 of the 14 pneumococcal titers and we have yet to test sub-classes or gain further understanding. We are in the process of scheduling an appointment with an Immunologist who has experience with PANDAS and can provide some perspective. What I do know is this is fairly common in PANDAS Kids and not sure an Immunologist will have a complete or clear understanding. They do know that IVIG is extremely helpful in providing antibodies that will potentially rid your child of any ongoing infection or potentially any attack on the basal ganglia. Here are my son's results. Hopefully, it helps to know its common.

Strep Pneumoniae IGG AB 14 Serotype:
Serotype:
1 <0.3*
3 1.5
4 0.3*
5 2.0
8 <0.3*
9 <0.3*
12 <0.3*
14 0.6*
19 3.5
23 0.6*
26 4.4
51 0.4*
56 0.3*
68 <0.3*

#3 ShaesMom

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Posted 08 September 2009 - 03:31 PM

Hi Kg5132

I may be wrong but I believe my daughter was the first one on this forum to fail the titers test and receive a dx of a Primary Immune Deficiency Disease and therefore start receiving the monthly IVIG. She also failed 12 of the 14. I think there are a couple of other kids who failed before her but their immuno doctors were unconcerned about the results. As far as this being fairly common with Pandas kid I think it is too soon to say. We are discovering that more and more of them seem to have some underlying immune issue. I believe the count is now up to somewhere around 15 who have the blood work done and who have failed.

It is very confusing to try and wrap your head around the different concepts. The low IgG levels means your child makes antibodies but not enough. The failed pneumococcal titers test means that your child's immune system does not use the antibodies that he is making and then the Pandas side of it means that the antibodies he does make are attacking his brain. Our all his immune system is just messed up. <_<

The medical community will tell you that the streptococcus pneumonae and strep A are different strains and therefore the results of the Pneumococcal titers test really aren't conclusive as to how your child will respond to strep A. Obviously, what you do know is that your child's body is not fighting infection properly-whether it be strep A or another infection. I personally say baloney to the part that they are not in anyway the germ.

Your child may have received a dx of a Specific Antibody Deficiency (SAD) or Common Variable Immune Deficieny (CVID). Both of these fall under the spectrum of Primary Immune Deficiency Diseases (PIDD). There are approx. 150 different PIDD's. The good news is that a dx of SAD is one of the lease invasive of the PIDD's. The other good news is that it is a recognized disease for insurance purposes and that IVIG is the standard treatment plan. The bad news is that IVIG may be required for life. Since your child is 15-his immune system has already stopped "growing" Average age for a mature immune system is around 5.

It is common practice for Immunologist's to revaccinate with the Pneumovax vaccine and then retest the titers again in 3-4 weeks. Please be aware that this vaccine does have various strains of streptococcus in it-but not Strep A from what the doctor's will tell you. Our doctor did not feel it was necessary to revax our daughter at this time because she had a full course of Prevnar during her regular vaccine schedule. If he had wanted to, I probably would not let him do it because of the PANDAS.

I have to pick my kids from school now but I'll post some links for you when I return.

Sam

#4 sf_mom

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Posted 08 September 2009 - 03:56 PM

I defer to Sam, as our son is newly diagnosed..... sorry, as I thought failure of streptococcus pneumonae titers was more common.

-Wendy

#5 ShaesMom

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Posted 08 September 2009 - 04:04 PM

I defer to Sam, as our son is newly diagnosed..... sorry, as I thought failure of streptococcus pneumonae titers was more common.

-Wendy



I believe at last count Diana and I have around 15 who have failed out of over 100 kids who have Pandas. Hopefully, as more parents request the immunological bloodwork we will see more of a pattern and be able to include it as a diagnostic tool for diagnosis.

#6 ShaesMom

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Posted 08 September 2009 - 04:16 PM

My suspected 15-year-old PANDAS son has his IGG and other immune functions tested.
His IGG was found to be slightly lower than a reference range.

More problematic were pneumococcal titer results. 12 out of 14 serotypes for the son's pneumococcal titers were almost zero,
meaning, according to the son's doctor, that the son has no ability to fight off strep infections as he is not capable of producing antibodies to the 12 serotypes. This left me puzzled. If he has no ability to produce antibodies to strep, then how it is possible for his basal ganglia to be attacked via antibody cross reaction? How can we explain the stated linkage between his PANDAS symptoms, tics and OCD, and this pneumococal thing?

I hope to get comments from anyone versed in this field.


KG5123



#7 ShaesMom

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Posted 08 September 2009 - 04:33 PM

Oops-let's try this again.

You can learn more about PIDD's at the Primary Immune Deficiency Foundation's website. Here is a link to one of there publications. I think it is important to read chapter's 1, 2 & 10.

http://www.primaryim...s/book_pats.htm

Another good website is the Jeffrey Modell Foundation. www.jmfworld.com The foundation was started by a family who lost their son to a PIDD.

There isn't a lot of information available on Specific or Selective Antibody Deficiency. It usually is lumped with CVID. But here is what I have found so far:

http://www.uptodate....~/3O3rTLTTn__c/
http://pedsinreview....tract/21/10/358

If you like to read-here is a link to a bunch of other articles but I think you have to pay for most of them:

http://www.jacionlin...dy deficiencies

Another site where I learned some good info was actually the Prevnar vaccine site. Prevnar has 7 of serotypes that fight against streptococcus and is given to children under the age of 5. Pneumovax has I believe 23 serotypes and is given to anyone over the age of 5-most commonly adults. It is actually readily available this time of year at most pharmacies. Try this link:
http://www.prevnar.c.../pneumo_iq.aspx If it doesn't work go to Prevnar.com and click on the dancing Pneumo guy on the left hand side. You should see an animated video.

For anyone interested: the serotypes in Prevnar are: 4; 6B;9V;14;18C;19F

Hope this helps some!

Sam

#8 debbie1

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Posted 08 September 2009 - 08:20 PM

I believe at last count Diana and I have around 15 who have failed out of over 100 kids who have Pandas. Hopefully, as more parents request the immunological bloodwork we will see more of a pattern and be able to include it as a diagnostic tool for diagnosis.


Shaesmom,

I'm not clear on this - Did 100 kids go though the immuno. bloodwork and 15 failed? Or out of 100 PANDAS kids that you are tracking, you know of 15 that have taken the test and failed?

I took my dd for the testing last Friday. Still waiting for results.

Debbie

#9 ShaesMom

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Posted 08 September 2009 - 08:51 PM

I believe at last count Diana and I have around 15 who have failed out of over 100 kids who have Pandas. Hopefully, as more parents request the immunological bloodwork we will see more of a pattern and be able to include it as a diagnostic tool for diagnosis.


Shaesmom,

I'm not clear on this - Did 100 kids go though the immuno. bloodwork and 15 failed? Or out of 100 PANDAS kids that you are tracking, you know of 15 that have taken the test and failed?

I took my dd for the testing last Friday. Still waiting for results.

Debbie


According to Diana, there are approximately 100 kids who have Pandas (I believe the number was slightly higher than 100). We know of approximately 15 who have had the blood work completed and unless something has changed since the last time I talked with her about it-all 15 have had the results come back showing deficiencies in either the IgG subclasses and/or Pneumococcal titers. Hopefully, she will correct me if I am wrong on these results. Unfortunately, it appears that not all Immunologists are on the same page as how to interpret and treat for these results.

#10 peglem

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Posted 08 September 2009 - 09:01 PM

My daughter is not on Diana's list, but she did the pneumococcal test (no previous vaccine) her immune system did respond to the second vaccine. She has not been tested for IgG subclass deficiency...she continues to get strepA, but the immunologist (2 years ago) decided she was "just a strep carrier". I'll see if I can get her pediatrician to test subclasses. Y'know, he's the only doc we've seen who really believes that there is something going on with her immune system and that she has PANDAS.

-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.


#11 angsabalmom

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Posted 08 January 2011 - 07:38 PM

****JUST DIAGNOSED LOOKING FOR ANY INFORMATION WOULD BE GREATLY APPRECIATED*****
Hello Everyone,
I am new to this board.My son has finally been diagnosed at age 15 after years of suffering with chronic sinusitis, cough, asthma, stomach aches, headaches, allergies etc. His Allergist/Immunologist took 12 tubes of blood and he said he is diagnosed with SELECTIVE CARBOHYDRATE ANTIBODY DEFICIENCY (which I have no idea what it is but i believe it is a immune deficiency?) He have him the pneumonia shot and a blood work order that we are to do in 2 months.My son also is in Special Education and has a learning disability. I am in a constant battle over his absences now that he has a diagnosis and a letter stating it I have a PPT this Wed, and will present this info and the letter to the school at that time. His blood test results are as follows:

STREPTOCOCCUA PNEMONIAE IGG AB (14 SEROTYPES)

SEROTYPE 1 (1) results 1.0
SEROTYPE 3,4,5,8,8,12,14,19 result is 0.3

I have no idea what this means.If anyone has any information and or suggestions they would be greatly appreciated, thank you all for your valuable time.
Sincerely,
angsabalmom@aol.com

#12 kimballot

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Posted 08 January 2011 - 08:42 PM

****JUST DIAGNOSED LOOKING FOR ANY INFORMATION WOULD BE GREATLY APPRECIATED*****
Hello Everyone,
I am new to this board.My son has finally been diagnosed at age 15 after years of suffering with chronic sinusitis, cough, asthma, stomach aches, headaches, allergies etc. His Allergist/Immunologist took 12 tubes of blood and he said he is diagnosed with SELECTIVE CARBOHYDRATE ANTIBODY DEFICIENCY (which I have no idea what it is but i believe it is a immune deficiency?) He have him the pneumonia shot and a blood work order that we are to do in 2 months.My son also is in Special Education and has a learning disability. I am in a constant battle over his absences now that he has a diagnosis and a letter stating it I have a PPT this Wed, and will present this info and the letter to the school at that time. His blood test results are as follows:

STREPTOCOCCUA PNEMONIAE IGG AB (14 SEROTYPES)

SEROTYPE 1 (1) results 1.0
SEROTYPE 3,4,5,8,8,12,14,19 result is 0.3

I have no idea what this means.If anyone has any information and or suggestions they would be greatly appreciated, thank you all for your valuable time.
Sincerely,
angsabalmom@aol.com


Hi - Welcome to the forum. Could you tell us what the "reference range" was for the serotypes.? Also - you've posted serotype 8 twice - did you mean to post a different serotype? Were any of the serotypes above 0.3?

Also, was IGA in the normal range?

Parent of teenager with PANS from young age. Mild primary immune deficiency. Chronic sinusitis. Possible bartonella,  Antibiotics.  IVIG. History of severe exacerbations.  Continues to show improvement. There is hope for our children.  Let's work together for early identification and treatment!





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