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Mayo Clinic T-Cell Phenotyping Test #89319


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From what I understand, this is a fairly new test that my PANDAS kids are going to have done. The Dr. is most interested in learning about their memory T cells to see how it affects their immuno deficiencies. Have any of your kids had this blood test and if so was it effective in pieces together the pieces, especially for treatment?

 

Here is a link to the test info:

 

http://www.mayomedicallaboratories.com/test-catalog/Overview/89319

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Yes my docs nurse mentioned they have been using this test at the immunology clinic. I believe this may also be helpfuk for austistic children looking for immune issues. Please keep us informed as to what ur doc is looking for and what this test tells us about our childrens immune system. Does ur child receive ivig for immune deficencies?

From what I understand, this is a fairly new test that my PANDAS kids are going to have done. The Dr. is most interested in learning about their memory T cells to see how it affects their immuno deficiencies. Have any of your kids had this blood test and if so was it effective in pieces together the pieces, especially for treatment?

 

Here is a link to the test info:

 

http://www.mayomedicallaboratories.com/test-catalog/Overview/89319

Edited by nevergiveup
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A question for the scientists, I read the test data, and it talks about CD4 T cells increasing throughout the day, low in morning and increases throughout day, also mentioned temperature and hormones increase CD4 T cells. Could this have something to do with tics. They consistently are more agrressive in the afternnon and evening. Same with OCD symptoms. If anyone can help explain T vs B cells, Could the t cells be causing tics in the brain. Or is it that they increase inflammation causing the tics? Would love to understand what this test is looking for and how it may relate to pandas?

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Well Dr. B was suggesting IVIG for their immune deficiencies. Dr. T felt we needed to exhaust all other avenues and save IVIG for last resort so he suggested this Mayo Clinic test to look at all T cells but most interested in Memory T cells to see how they function. The kids have other blood work to do so I figured we should go ahead and do this along with it. Not sure how beneficial it will be but any answers I can possibly obtain are golden to me. I'll let you know if it's helpful.

 

I guess my big question is, even if we get to 95% improvement before IVIG, would IVIG make them have better robust immune systems and make things better in general for them??? I get so torn. I feel like I'm getting a cold and I fear them getting it or anything else now that school is started. I am just happy my DD went to school yesterday and today and loved it. She missed pretty much the last month last school year and on the off chance we got her there she refused the bus and only could handle half days. Yesterday rode the bus to and from school and stayed all day. So we are improving...baby steps. :D

Edited by kmom
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From what I understand, this is a fairly new test that my PANDAS kids are going to have done. The Dr. is most interested in learning about their memory T cells to see how it affects their immuno deficiencies. Have any of your kids had this blood test and if so was it effective in pieces together the pieces, especially for treatment?

 

Here is a link to the test info:

 

http://www.mayomedicallaboratories.com/test-catalog/Overview/89319

Do you have the name of the doctor/s that are working on this at the Mayo clinic? I am asking because I was just looking at their website and review the docs their that are studying movement disorders.

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fcefxer--Thank you, thank you! First parent I have heard knows about this test! Yes, that's similar of what I remember from Dr. T. The problem is, I went to Quest Lab with both kids for multiple tests and they couldn't do this Mayo Clinic one. We did the other lab tests and were sent away with a no on that one. They told me the blood is only stable for 24 hrs. and they can't transport the specimen down pick up spot in time for it to get to Rochester, MN for testing. How did go about the test? Can I Fed Ex it like I've done for Dr. Cunningham and Igenex? I hate to have to put the kids through yet another blood draw but it's worth it to me. My DS5 said today, "Mommy, you keep saying it's the last time but then we go to the lab again!" He's my calm one at the lab. But the good thing is my DD8 is actually getting even better overcoming her fears of the blood work...it helps that I bribe and head to the store for an art and craft activity afterward! Huh, so tired of medical stuff but not giving up till I win this darn battle!!!

 

ajcire--not sure. My kids have immune deficiencies but aren't sick all the time.

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  • 11 months later...

My son (16) has had this test done as ordered by Dr. T. I went to my local hospital to have it done, and it seems like the blood may have had to be spun there (but I can't really remember). The hospital was fine about overnighting it to Mayo and was very familiar with how to do this. My only problem was that the insurance tried to deny paying for it, though they did in the end. The hospital fought it for me. I really don't know the ins and outs of it, but you may want to check that your insurance will cover it as I think the bill was high. I guessed that the problem may have been that the test is not FDA approved (hope I'm rememberinig that right).

 

Dr. T. ran the test as part of the process of justifying to insurance the need for IVIG or PEX as my son was not showing immune deficiencies on the normal tests (immunoglobulins and IgG subclasses all normal). He said the results showed enough deficiency to justify a CVID diagnosis, but I don't if it worked as I haven't gotten that far with my son yet.

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  • 2 months later...

Hello,

 

Dr T wants this on my son too, and we ahve not much tiem to wait; he is doing very poorly.

 

Anyone had luck getting this one at LabCorp? my PED and her hsopital well, she would have to order it for it to be drawn adn even then I am not sure they would get it there on time. Ideas? Depserate!! We need answers son in bad shape.

 

Also, if anyone remembers the approx cost I would appreciate it.

 

Thanks,

 

C (AZ)

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To be honest I forgot about this test. No never got it done. I never understood why Dr. T told us to get a test that was impossible to obtain. I tried every which way and even called Mayo Clinic in Rochester, MN. I basically had to be there to have the test done.

 

I am sorry about your situation. I have been with my son abd daughter. Luckily, I switched gears from seeing only PANDAS dr's such as dr T and Dr. B and found 2 fantastic Lyme Literate dr's who really understand infections in general because my kids weren't only ailing from strep bacteria thus focusing purely in strep was not getting my kids well. We were in a cycle @ best where we had horrible weeks and then a few better ones. Finally exploring other bacteria, we got to the root of the problems and the kids are so much better. We finally felt we were getting somewhere and not stabbing @ things in the dark. Dr. T was VERY kind to us when he was REACHABLE but he really only got the pANDAS end of things and acted shocked when we figured things out and explained the other bacteria infections causing the autoimmune response. I could name dozens of other parent who had similar stories to mine and whose kids are now thriving and regaining their childhood's back b/c their parents finally said, I need to explore another angle/ method of treatment.

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My son (16) has had this test done as ordered by Dr. T. I went to my local hospital to have it done, and it seems like the blood may have had to be spun there (but I can't really remember). The hospital was fine about overnighting it to Mayo and was very familiar with how to do this. My only problem was that the insurance tried to deny paying for it, though they did in the end. The hospital fought it for me. I really don't know the ins and outs of it, but you may want to check that your insurance will cover it as I think the bill was high. I guessed that the problem may have been that the test is not FDA approved (hope I'm rememberinig that right).

 

Dr. T. ran the test as part of the process of justifying to insurance the need for IVIG or PEX as my son was not showing immune deficiencies on the normal tests (immunoglobulins and IgG subclasses all normal). He said the results showed enough deficiency to justify a CVID diagnosis, but I don't if it worked as I haven't gotten that far with my son yet.

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