Immunological bloodwork

[ShaesMom]

We got our labs today and we failed 10 of the 14 prevnar levels and diptheria vaccine as well. His IgE was extremelly elevated (240). Have not great idea of what this meand yet but interesting. We are heade to see Latimer Wed and the immunologist again in three weeks. We are also allergic to soy and baker's yeast. Very strange.

 

 

Did you know about the food allergies before? Is baker's yeast any kind of yeast that you would use in baking or is it something else? I guess my question is can he still eat bread? IgE relates specifically to allergens so it is likely elevated because of the food allergies.

 

How many of his pneumo titers were below 2 and how many were below 1? Anything below 1 is a "complete" (and I use that word lightly) failure. Shae only had 3 above 1 so she was a "complete" failure. Are you going to revax if they recommend it-which they likely will.

 

Let us know what you find out.

 

Sam

[FallingApart]

Mom md,

 

Prior to PANDAS, was your son a sick child? Also, have you done IVIG? I would assume that at this point, you will be doing it in the near future if you haven't yet done it.

[hopefulmom]

Hi everyone,

 

I'm not really sure where to begin so here's goes:

 

Many of you have probably read that Shae was dx'd in June with a Primary Immune Deficiency called CVID or SAD in addition to her PANDAS. This was discovered by her allergy doctor running a complete Immunological bloodwork panel. She came back with normal levels on all antibodies or immunoglobulins (Igg, Iga & Igm) and her Igg subclasses levels were all normal as well. They also did what is called a Pneumococcal Titers test. Buster can probably give you a better description of how it works but the gist of it is that they tested her antibodies to see if they actually worked when faced with an infection. She failed 12 of the 14 strains. What this means is that even though her body makes normal levels of antibodies they do not work correctly. When she has an infection, instead of going to work and fighting it-her antibodies do nothing.

 

I have been "working" with Diana for the last few weeks on gathering info regarding these tests. So far, we know of 11 children with Pandas who have had the immunological workup and failed some part of it. To date, all 11 have failed the pneumococcal titers test. There has to be a connection.

 

If your child is under the age of 10, it is likely they received the Prevnar vaccine during their routine vaccination schedule. The Prevnar vaccine is to guard against seven of the Pneumococcal titers. Another name for the Pneumococcal titers is streptococcus pneumonea. The vaccine protects against strep. pneumonea, meningitsis, and pneumonia. You can learn more about the vaccine and what it does at www.prevnar.com. Click on the dancing Pneumo guy and it will take you to a link with an animated video regarding the vaccine. Any doctor out there is going to tell you that strep pneumonea and strep A are different strains. This may be true, but if our kids cannot fight infection to strep pneumonea how do we know that they have the ability to fight off a strep A infection? We don't and neither do the doctors.

 

The benefit of being dx'd with a primary immune deficiency (PID) is that if IVIG is recommended-insurance should pay for it! Unlike Pandas, it is a recognized disease. I would strongly like to encourage anyone who has not already done so to please request the following tests for your PANDAS children:

 

IGG & IGG subclasses

IGM

IGA

Pneumococcal Titers Test

Tetanus Titers Test

Diptheria Titers Test

 

You can learn more about PID's at the Immune Deficiency Foundation's website www.primaryimmune.org Click on the link to the Publications and then the link to the Patient & Family Handbook. Read Chapters, 1, 2 & 10. You can call them at 800-296-4433 and ask for a doctor in your area. You can also visit www.jmfworld.com and click on their link to find an expert in your area.

 

We are very possibly on to something here that has the potential to help our kids.

 

Sam

[Guest TwinCitiesMom]

Our 14 yo failed all pneumococcal serotypes. The 2 different immunologists we consult with have said this is significant.

[EmersonAilidh]

Can anyone tell me how I could recognize this test if I have the lab work in hand? My immunologist ia currently in India so I've kind of just been sitting on this workup for the time being.

[dcmom]

The deal is, there is NO research on this subject- in the general population, even. Theoretically, if vaxed, you should have some immunity- but there are a lot of factors- the vaccine could be faulty (I think this is a major possibility- do you trust the drug companies?, if given advil with vaccination it could render it less effective (somewhat recent study about all vaccines), etc.

 

Our team of immunologists at Gtown said they do not consider it a deficiency. I think you will find the same with the majority of mainstream docs. I of course, would not even consider revaxing- but I would think if you were immune deficient- there would be other numbers out of whack.

 

Interestingly enough, my kids had extremely robust pneumo titers. They are both classic pandas.

 

However- you are not imagining things. I have a personal thought that whatever this pandas stuff is, can slowly CAUSE immune deficiency. Maybe the horrific strain of strep that triggers the autoimminity also damages the immune system? Ran it by DR T- he said could be the case.

 

My older dd was NEVER sick, second grade- perfect attendance. Since pandas, I would say she has missed an avg of three weeks of the school year for illness (pandas ocd/anxiety not included). Nothing major, a virus, H1N1, strep- stuff that is going around. It isn't enough to say immune deficiency- although some numbers are on the lowish side- but I wonder if she is headed that way.

 

I also wonder what daily antibiotics for two years does to your immune system?

 

Unfortunately, I am at the point where I no longer have too much trust in how much doctors really know. I know that I can seek out ones to say: no pandas, yes pandas, no lyme, yes lyme, no immunodeficiency, yes immunodeficiency- and all of them well meaning, smart people. So I now follow my instinct, and try to continue with therapies that work, and discontinue ones that don't.

 

It is a crappy position to be in I am not a scientist- but I am a mom.

 

Emerson- you are smart, informed and take care of yourself. I only hope I can raise my daughters to take the reins from me one day, and be really proactive about their health.

[cynditk]

Can anyone tell me how I could recognize this test if I have the lab work in hand? My immunologist ia currently in India so I've kind of just been sitting on this workup for the time being.

 

Emerson you should have an immune workup if you have that many dx's. Sounds like a possible immune deficiency to me.

[ShaesMom]

Definition of Common Variable Immune Deficiency

Common Variable Immune Deficiency (CVID) is a disorder characterized by low levels of serum immunoglobulins (antibodies) and an increased susceptibility to infections. The exact cause of the low levels of serum immunoglobulins is usually not known. It is a relatively common form of immunodeficiency, hence, the word “common.” The degree and type of deficiency of serum immunoglobulins, and the clinical course, varies from patient to patient, hence, the word “variable.” In some patients, there is a decrease in both IgG and IgA; in others, all three major types (IgG, IgA and IgM) of immunoglobulins may be decreased.

 

It says nothing about response to a vaccine?

 

Also, if you didn't have the PREVNAR vaccine, you're going to fail an immune response to it. right? Sheasmom, did your daughter have the PREVNAR vaccine?

 

You are confusing CVID with Selective Antibody Deficiency. Yes-my dd had all required vaccinations including Prevnar.

[ShaesMom]

Our 14 yo failed all pneumococcal serotypes. The 2 different immunologists we consult with have said this is significant.

 

 

But Busters chart clearly shows that levels normally fall after vaccination even in normal kids and its the REVAX that allows the levels to rise.

 

So we should ignore our Immunologists because of Buster's chart?

 

We see one of the top 5 Immunologists in the country according to a reputatable professional organization. I'll stick with his opinion and successful treatment history.

[dcmom]

I think it is interesting to discuss also.

 

I think we have all seen here, that it is very easy to find docs with varying opinions on the same test results. If this wasn't the case, there would be less need for this forum.

 

Our cases are all very difficult, and need to be diagnosed with test results and clinical picture.

 

It is great for us to discuss our docs differing views, because in the end, WE are the decision makers, the more info the better.

[mamapanda]

I am going to get this work up done on my son. He was fine and healthy for the first 5 years of his life (but . . he stayed home with his dad and we lived in a remote area of the country where he wasn't exposed to much). Just a couple of months into kindergarten after moving to the midwest, he came down with pneumonia. He was hospitalized and spent 10 days in the hospital trying to fight it, and he nearly died. His lungs were engulfed and he had a pleural effusion before they started vancomycin, which killed the pneumonia. He's been sick on and off since, and had his tonsils out last spring and now constantly has strep.

 

Very interesting information, thank you.

[jenbug]

Wow, that is very interesting, espeically since my children and myself included failed many of those titers!

[kimballot]

I am going to get this work up done on my son. He was fine and healthy for the first 5 years of his life (but . . he stayed home with his dad and we lived in a remote area of the country where he wasn't exposed to much). Just a couple of months into kindergarten after moving to the midwest, he came down with pneumonia. He was hospitalized and spent 10 days in the hospital trying to fight it, and he nearly died. His lungs were engulfed and he had a pleural effusion before they started vancomycin, which killed the pneumonia. He's been sick on and off since, and had his tonsils out last spring and now constantly has strep.

 

Very interesting information, thank you.

 

Mamapanda - welcome to the forum. A good immune workup is very important for our kids. Please keep us posted on your results!