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For those of you who have run the immunology testing - why did you initially do that? Was it to get IVIG paid by insurance?

 

I recall reading someone's immuno said pandas is really a symptom of an immune problem, not a condition of itself. Is that what you now believe having run those panels?

 

do you think the issue is the immune system doesn't produce the proper antibodies or that the antibodies don't work correctly?

 

did anyone run the panels and come back normal?

 

thanks!

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Hello:

 

Our immunologist told us that he believes PANDAS is a symptom of an immune weakness. I especially believe him now that I am noticing that almost everyone here who runs the pneumococcal titers previous to IVIG have children who fail the majority of the pneumo titers. It seems that this is the one area where we are all similar. We also failed the Hepatitis B vaccine, while other children have failed the Tetanus vaccine, etc.... It seems that the IGG levels vary between us. Are we seeing a trend of low total IGG Serum? Our son was on the low end of normal for the IGG Serum.

 

I went to an immunologist once I saw that Shaesmom did the panel. Thank You to Shaesmom!! I was so scared that we would be one of the 20% who did not have long term success with IVIG and I also wanted to know more about how we ended up here in this PANDAS world in the first place. And I still want to keep digging deeper!

 

I really feel that we are all helping each other so much!

 

Elizabeth

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I too believe that my daughter has an underlying immune related issue. We have not found it yet but are trying. Immune related tests also taught me that my girls can't eat gluten (wheat and other gluten grains).

 

I have 2 PANDAS daughters. One improved by going gluten free and getting a good run of antibiotics. She is about 90% right now and shows no signs of other immune related issues. I think her remaining issues are yeast related. My other daughter improved with gluten free and antibiotics but not as much. She has all kinds of strange symptoms so we are still searching. If we are headed to IVIG, I do hope to find something that would allow it to be paid for by insurance.

 

Our total IgG was normal, on the lower side but I don't think it would be considered low. Our total IgA is what I would consider low (37 with low normal 34). Our immnologist was not concerned about this one but we will see how it goes. We are right in the middle of it all right now. I'll be posting once I learn more.

 

Susan

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Susan:

 

How did your pneumo titers come out on your immunological work up?

 

Elizabeth

 

Well, she "failed" 12 of 14 if you are looking for numbers under 2. But I understand there are other immunologists that say it's results under 1 and that it matters which ones. She had 6 of those 12 that were between 1 and 2. I don't know what our immunologist will think of the results. I need to have a plan for what I want to ask her about these titers by the 14th because if I go in and she just says "oh they are fine" I think I'll be pretty upset. I want to have a real discussion about the whole topic but I don't feel like I know enough to do it.

 

Susan

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For those of you who have run the immunology testing - why did you initially do that? Was it to get IVIG paid by insurance?

 

We were one of the first - possibly THE first. I guess you could call it a nagging "mommy" feeling or just God leading the way. We already had the Pandas dx and blood work showing normal levels of all Ig's and subclasses but I just couldn't let it go that something else was wrong. My dd in addition to the strep has a history of UTI's and chronic constipation. She was hospitalized for a Pseudomonas infection in her bladder at age 4 which is a rare infection in someone who is healthy-but we didn't know that at the time. So, I sent her allergist a summary of her health history including the Pandas dx (his office also does immunology) and when she went in for her annual food allergy testing we had an indepth discussion about how the immune system works and he suggested we run some additional blood work. One of the tests was the Pneumococcal Titers test which appears to be the smoking gun for all these kids. It was just dumb luck!! [/color]

I recall reading someone's immuno said pandas is really a symptom of an immune problem, not a condition of itself. Is that what you now believe having run those panels?

 

I was thinking about this a lot yesterday. I love Elizabeth's doctor for making this statement and I personally think there is a lot of truth to it. I still believe Pandas is an illness itself but I truly wonder if the research should be headed in a different direction--what if the test to take is actually the Pneumococcal titers test to prove that these kids do not make antibodies to the streptococcus!! I have only read from one parent on this forum (sorry can't remember who) who has said there child did NOT fail the Pneumo titers test. I have been keeping a list and I have 15 failures and 1 non failure of the Pneumo. This is out of 16 families who have said that they did the blood work. Seems like we definitely have a pattern.

 

do you think the issue is the immune system doesn't produce the proper antibodies or that the antibodies don't work correctly?

 

[i][/i]That is exactly what the Pneumococcal titers test shows--that the antibodies or soldiers do not go to war against the strep antigens.

 

did anyone run the panels and come back normal?

 

thanks!

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I have only read from one parent on this forum (sorry can't remember who) who has said there child did NOT fail the Pneumo titers test. I have been keeping a list and I have 15 failures and 1 non failure of the Pneumo. This is out of 16 families who have said that they did the blood work. Seems like we definitely have a pattern. [/color]

 

do you think the issue is the immune system doesn't produce the proper antibodies or that the antibodies don't work correctly?

 

[i][/i]That is exactly what the Pneumococcal titers test shows--that the antibodies or soldiers do not go to war against the strep antigens.did anyone run the panels and come back normal?

 

Sam, do you have anything in writing that I can take my immunologist about what SHOULD constitute a failed titer and why revaccinating should not be an option for these kids? Or maybe we can start a list of immunologists who are treating based on these results to offer as resources for our doctors. I think there are only a couple that we no of so far right?

 

Susan

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I have only read from one parent on this forum (sorry can't remember who) who has said there child did NOT fail the Pneumo titers test. I have been keeping a list and I have 15 failures and 1 non failure of the Pneumo. This is out of 16 families who have said that they did the blood work. Seems like we definitely have a pattern. [/color]

 

do you think the issue is the immune system doesn't produce the proper antibodies or that the antibodies don't work correctly?

 

[i][/i]That is exactly what the Pneumococcal titers test shows--that the antibodies or soldiers do not go to war against the strep antigens.did anyone run the panels and come back normal?

 

Sam, do you have anything in writing that I can take my immunologist about what SHOULD constitute a failed titer and why revaccinating should not be an option for these kids? Or maybe we can start a list of immunologists who are treating based on these results to offer as resources for our doctors. I think there are only a couple that we no of so far right?

 

Susan

 

Sorry Susan the only thing I would have is the actual blood work results which has the paragraph below the results stating something like anything above 2 is considered an adequate response. Unfortunately, it sounds like each Doc has their own interpretation of the results.

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I just wanted to add: When I went in to talk with our allergist about this I had no idea what an immune deficiency was nor did I know that IVIG was the recommended treatment. It was all coincidence. So in answer to your question if we did the immune workup so that insurance would pay for IVIG the answer is NO--that turned out to be a BONUS!! :)

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We 1st went to the immunologist 2-3 years ago because we spent a year trying to get rid of strep that just coming back a few days after finishing a course of antibiotics (I suspect the pediatrician was thinking IVIG, but he didn't tell me that). I just asked one day, "shouldn't her immune system get rid of strep, even w/o abx?" (it should). So we decided to get the immune system checked out. Her total IgG was slightly low (subclasses were not checked), and her IgA was slightly low. Since my daughter had never had prevnar (it wasn't in the vax schedule yet when she was younger), they took a baseline of the pneumococcal titers-which were low. Retesting after vax was still low, but she showed an immune response after a 2nd vax so she was pronounced cured and declared to be a carrier of strep.

 

We were sent back about 6 months later- the strep kept coming back, and the pediatrician called the immuno during the appointment and specifically asked about IVIG. He was told IVIG would only replace what she already has.

 

Just recently, after talking to Cunningham and Latimer, my pediatrician ran his own immune panel, including IgG subclasses- this time IgA is extremely low, and she has low IgG4, so we're going back to the immunologist...but this time we did do the immune workup to try to find something that would justify IVIG to the insurance company. I'm nervous about going back to this immunologist because I got the impression that he just thinks I'm a mom who can't accept the autism dx. And he doesn't realize (few doctors do) that autism is just symptoms, not really a dx at all.

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I just wanted to add a few more notes to this topic.

 

Susan, our immunologist considered anything under 2 as failed for the pneumo titers. I would look at the actually blood work because perhaps each lab has a different range.

 

Another mom on this forum went to see and immunologist in Connecticut, who was recommended by Dr. Leckman, and this immunologist said that all of his PANDAS patients are failing the pneumo titers previous to IVIG.

 

He believes that these children produce antibodies to strep, but they behave badly and attack the brain cells instead. Anyway, he said that IVIG helps the body produce antibodies that act appropriately and that these children will not need even the antibiotics once their bodies are healed.

 

That gives me so much hope for all of our children!

 

Elizabeth

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The tests for s.pneumonia titers are not Strep A strains that are implicated in PANDAS. Failing the s. pneumonia titers has no indication on how your child will respond to group a strep.

 

I'm sorry PMom-I have to disagree with you.

 

1) The experts "believe" that strep A & streptococcus pneumo are completely different BUT the experts also believe that PANDAS doesn't exist. IMO-they could be wrong.

 

2) Dr Cunningham indicated to Diana when she visited her that she believes Pandas may be caused by strep pneumo in addition to strep A. I believe a summary of her visit is posted under another thread.

 

3) Does anyone know----ASO titers--does this blood work ONLY show a recent exposure to strep A or does it show exposure to any type of strep? I will be asking my immuno about it on the 14th.

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I have also heard that failing the pneumo titers also explains why most of these children do not show typical symptoms of strep, like a sore throat and a fever. It is interesting that the other similarity we see is the asymptomatic strep symptoms.

 

I will also be meeting with our immunologist this week so I will ask these questions.

 

elizabeth

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