Question about Dr. Cunningham

[LMama]

Question: I have contacted Dr. Cunnigham via email, and my son does qualify for her study. I am considering sending her his blood sample. I have heard people talking on this site about her, that is how I found out about her.

 

Can someone please explain to me what the purpose of her study is and what the blood tests that she runs will tell us? She has sent me some literature via email, but to be honest, I really just don't understand it. It's all so very technical. I want to participate if it will help us or give us new information that can help us in diagnosing for sure if this is PANDAS or Tourettes, etc. I feel so strongly that it is PANDAS. I hope that maybe her blood tests will help us know if it is or not?

 

Thanks!

LMAMA

[peglem]

Maybe this explanation from Buster on another thread will help?

http://www.latitudes.org/forums/index.php?...art=#entry34463

[LMama]

Maybe this explanation from Buster on another thread will help?

http://www.latitudes.org/forums/index.php?...art=#entry34463

 

Thank you! I understand a lot more now!

[Guest asaxon]

Question: I have contacted Dr. Cunnigham via email, and my son does qualify for her study. I am considering sending her his blood sample. I have heard people talking on this site about her, that is how I found out about her.

 

Can someone please explain to me what the purpose of her study is and what the blood tests that she runs will tell us? She has sent me some literature via email, but to be honest, I really just don't understand it. It's all so very technical. I want to participate if it will help us or give us new information that can help us in diagnosing for sure if this is PANDAS or Tourettes, etc. I feel so strongly that it is PANDAS. I hope that maybe her blood tests will help us know if it is or not?

 

Thanks!

LMAMA

 

Dear LMAMA,

 

As I understand it, Professor Cunningham tests for several antibodies that are suspected of being responsible for PANDAS OCD. It will tell you that, IF Professor Cunningham's hypothesis is correct and those antibodies that she's testing for are in fact the antibodies that cause PANDAS, then your daughter has PANDAS. It's worthwhile participating and getting the results, since the more information you have the better, but the results will not definitively either confirm or rule out PANDAS.

 

I am not a doctor or researcher; I'm just a parent of a child suspected of having PANDAS, and I'm aggressively seeking the safest and most effective treatment. And I have reviewed the research and discussed PANDAS with researchers studying PANDAS and specialists treating it. And as I understand it, although researchers don't know exactly which antibodies cause PANDAS, or even whether strep is the only infection that can trigger the antibodies that cause sudden-onset OCD in children, it is fairly certain that sudden-onset OCD in at least some young children is clearly related to some kind of autoimmune response and a resulting inflammation or other reaction of brain tissue. And, it has been shown that for those children, immune modulation therapy like IVIG or plasma exchange can be effective treatments that reduce or eliminate the OCD.

 

Once other, scarier possible causes (like a tumor), are ruled out by a neurologist, and assuming a child fits the PANDAS profile, the best diagnostic test available for PANDAS today seems to be to try a steroid burst (a course of Prednisone). You may be familiar with Prednasone--doctors proscribe it routinely for things like severe allergic reactions, asthma, and rashes (like poison ivy). It works by temporarily suppressing immune response and reducing inflammation--presumed to be the direct cause of the PANDAS symptoms--long enough to see an improvement in symptoms. If there is an improvement, it will often but not always be a temporary improvement, but in any case it will tell you that some inflammatory and/or an immune mechanism is at work in causing your daughter's OCD, which will help you decide whether to pursue other immune modification treatment, like IVIG, and/or prophylactic antibiotics. (Long-term use of steroids has nasty side effects, which is why it is usually only prescribed in short bursts.) Note that there is no direct research to support the use of steroids to diagnose or treat PANDAS, which is where you will most likely run into trouble with your doctor.