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Hi ,

 

My son is going to be tested. I am waiting for the kit in the mail. Just wondering if, labs will do the blood work or do you have to pay them to do it? For all of you who had the test done, were your childrens positive results in the high range? Any feedback would be appreciated. Thanks Char...

 

I had the lab draw the blood at the same time that my daughter was already getting a physician ordered draw. That way, the lab just had to fill the two study vials from the puncture that had to be done anyway. The lab did not charge us and the phlebotomist spun it for us as well (though I think she did this under the radar, w/o the lab manager knowing).

 

If I'm reading the results correctly, I think my daughters CamKinaseII was in the SC range, the antibodies were about in the middle of the positive range, if I'm understanding correctly.

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Hi, y'all:   I know that some other folks on here have elected to participate in Dr. Madeleine Cunningham's (leading researcher from OUHSC) blood test research study. Dr. Cunningham has co-publishe

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Hi ,

 

My son is going to be tested. I am waiting for the kit in the mail. Just wondering if, labs will do the blood work or do you have to pay them to do it? For all of you who had the test done, were your childrens positive results in the high range? Any feedback would be appreciated. Thanks Char...

 

I had the lab draw the blood at the same time that my daughter was already getting a physician ordered draw. That way, the lab just had to fill the two study vials from the puncture that had to be done anyway. The lab did not charge us and the phlebotomist spun it for us as well (though I think she did this under the radar, w/o the lab manager knowing).

 

If I'm reading the results correctly, I think my daughters CamKinaseII was in the SC range, the antibodies were about in the middle of the positive range, if I'm understanding correctly.

 

 

Peglem--

Those Cam Kinase levels seem quite high. (According to the research-article graph.)

 

Our ds levels were in the middle of the PANDAS group, and it is my understanding that our results indicate the presence of the antibodies (even still after a few months of antibiotics and a few weeks of steroids.)

 

Do we know if the Cam Kinase levels (if they are as high as your ds level) possibly indicate SC? --or is it an indication of a continuum of degree--of the effect of the antibodies? Was your dear d in the midst of an exacerbation when you had her blood drawn?

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I am awaiting 4 kits that they mailed out to today me to have all 4 kids tested. They mailed them in two boxes in case I wanted to do two at a time.

 

I am afraid, b/c they are on prophylactic Zithromax, that it will skew the test, but I can't stop the Zith right now. All of my kids were heavily exposed to strep for a week (4 cousins had strep during a week beach trip where we lived together, drank after each other, even licked the same lollipops--against my protests) , so even on Zithromax, I am seeing a BIG flareup in at least 2 of them, suspicious about the other 2.

 

Has anyone on Zithromax, or any antibiotics, gotten a negative result with the titer tests?? Is it something that my doctor's ofice can do or do I have to go to a lab? Does the lab charge you for the draw?

 

Thanks,

Colleen

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My child' s doctors office does not do blood draws or I would have had it done there. If they'll do it for you, that's what I'd do. I was very nervous about asking the lab to draw blood w/o a lab order, which is why I tagged it to a blood draw that was physician ordered. My daughter is on prophylactic zith, but she is on a 5days on/7days off schedule. I think I kept her on the off cycle for an extra day until I could do the draw. 7th day was on sat., so waited til Monday to do the test and gave her the zith after.)

 

I wonder too if all titers need to show positivity, or just the CamKinase to indicate PANDAS.

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I have a question about getting the blood draw done.

 

I am taking my 2 year old to the doctor this afternoon. He has what looks like a strep/scarlet fever rash all over and huge pupils. My other 3 kids are having flareups, even on Zithromax, but they were heavily exposed to strep for a whole week.

 

I think they will send me to a hospital lab for the draw. My question is, what do your doctor's put on the lab order sheet?

Thanks,

 

Colleen

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I have a question about getting the blood draw done.

 

I am taking my 2 year old to the doctor this afternoon. He has what looks like a strep/scarlet fever rash all over and huge pupils. My other 3 kids are having flareups, even on Zithromax, but they were heavily exposed to strep for a whole week.

 

I think they will send me to a hospital lab for the draw. My question is, what do your doctor's put on the lab order sheet?

Thanks,

 

Colleen

 

My doctor did not order the blood draw for the Cunningham study. I asked the lab to draw the blood when I had an order for some other labs the dr. wanted done. So the lab order was just for the tests her regular doctor wanted done. But, the lab will only be drawing blood for the Cunningham study, not performing any tests on that blood. When I checked into the lab, I showed them the email instuctions and study info that I had and just asked them if they could fill those other vials while they had her "tapped." Personally, I think it helped that the phlebotomist at that lab is familiar with us (my daughter is a VERY difficult draw, so when we find someone who can do her draws, we stick with them) and offered to spin them for us as well.

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Colleen, I called our pediatrician and explained the situation--they did the draw essentially as a favor.

I don't think they knew how to "code" it for payment, so they just did it and I took the vials and mailed them off. I did show them the paperwork as well. Hope it goes smoothly for you--

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Thanks for your responses.

 

Did your pediatrician spin it or just send the blood whole? I tknow they prefer it spun, but I am pretty sure my docs office cannot spin it, but would draw it.

 

My 2 yo is now running a fever in addition to the rash, so I think he has strep and this afternoon when we are in the office would be a good time to do it.

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I hope I'm using this forum properly. If not, forgive me, this is my first replying/posting.

 

My 6 year old daughter, Jessica, participated in Dr. Cunningham's study. She also has elevated Anti-Lysogagnlioside and Anti-Tubulin levels, and her Cam Kinase II score is 179%.

 

We live in Ventura County, CA and we went to the Children's Hospital at UCLA yesterday. Even after being dismissed by doctors what were unaware of PANDAS, I was hopeful that an institution like UCLA would respect the findings of an insitution like OUHSC -- I was wrong. They weren't even willing to email consult with OUHSC! They wanted to give us the label of autism and send us on our way, but that doesn't explain her symptoms and I've been told she's not autistic.

 

They said they had limited experience with PANDAS and that the condition resolves on its own within a year. Although Jessica had sudden onset OCD, her other symptoms have been long term. I believe she got strep at 12 months and the sudden onset OCD was triggered by exposure to Hand, Foot and Mouth Disease.

 

How long has your son had PANDAS related symptoms?

 

I don't know where you're located, but I have found a few doctors that are willing to treat PANDAS. as follows:

Dr. Kenneth Bock in New York

Dr. Miroslav Kovacevic at the Loyola University Stritch School of Medicine in Hinsdale, IL

Dr. Daniel Geller at the Massachusetts General Hospital in Boston, and

Dr. Catherine Nicolaides in New Jersey.

 

I think my biggest obstacle is going to be the affordability of the treatment. With our experience at UCLA yesterday, it doesn't look like our insurnace is going to cover treatment.

 

Hi, y'all:

 

I know that some other folks on here have elected to participate in Dr. Madeleine Cunningham's (leading researcher from OUHSC) blood test research study. Dr. Cunningham has co-published a number of journal articles with Dr. Swedo and others in relation to her blood assays and their dramatic correlation with both Sydenham's Chorea and PANDAS patients. Basically, they show elevated anti-neuronal antibody titers that are much more reliable indicators than the standard "ASO and Anti-DNase B" titer tests, in particular CaM kinase II levels (enzyme critical to neurotransmitter function in the brain). These titers show much higher levels for PANDAS kids vs. classic OCD, tics / Tourettes, ADHD, or healthy controls. (See http://www.jni-journal.com/article/S0165-5...0241-4/abstract ).

 

Well, we enrolled in the study, too. Our son's results were consistent with his PANDAS diagnosis: elevated anti-lysoganglioside, anti-tubulin, and signaling antibody levels. His CaM kinase II was at 187% of control, which puts him at the upper end of Dr. Cunningham's published PANDAS patient data.

 

You'd think this would be pretty definitive... but we STILL can't get a local doc to go along with the PANDAS diagnosis (although one is "considering the evidence"). :wacko:

 

Anyway, wanted to share this and see what other study participants are experiencing with their children's blood test results? Seems like this is a "smoking gun" that should convince (most) doubters, so if you're getting push-back from your local docs, might be worth volunteering for this study. More info about Dr. Cunningham can be found here: http://www.ouhsc.edu/mi/faculty/cunningham.html .

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I believe Dr. Gupta at UC Irvine will do IVIG for PANDAS, if you are interested. I don't think he uses the same dose as Dr. K...but that might be negotiable. That is a lot closer to you that Dr. K. and the others on your list. Diana Pohlman should know more about Dr. Gupta. (I'm pretty sure he I believe she's been in contact with him). Here's the website Diana made http://www.pandasnetwork.org/contact.html. Let us know if you have trouble getting in touch with her.

 

I'm sorry UCLA was a big dud. PANDAS most certainly does not just "resolve itself within a year." They are really misinformed. It is unfortunate, for us in the West, that there seems to be a better set of PANDAS docs in the East (Diana and I are both Northern CA).

 

As far as insurance. It seems like some folks are having luck getting IVIG covered if you can call it "autoimmune encaphalitis" or "unspecified immune disorder"....just stay away from the PANDAS label and its stigma. Here is a recent thread on insurance codes http://www.latitudes.org/forums/index.php?showtopic=5073

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Thanks so much for your reply. I will check out the links you provided.

 

I believe Dr. Gupta at UC Irvine will do IVIG for PANDAS, if you are interested. I don't think he uses the same dose as Dr. K...but that might be negotiable. That is a lot closer to you that Dr. K. and the others on your list. Diana Pohlman should know more about Dr. Gupta. (I'm pretty sure he I believe she's been in contact with him). Here's the website Diana made http://www.pandasnetwork.org/contact.html. Let us know if you have trouble getting in touch with her.

 

I'm sorry UCLA was a big dud. PANDAS most certainly does not just "resolve itself within a year." They are really misinformed. It is unfortunate, for us in the West, that there seems to be a better set of PANDAS docs in the East (Diana and I are both Northern CA).

 

As far as insurance. It seems like some folks are having luck getting IVIG covered if you can call it "autoimmune encaphalitis" or "unspecified immune disorder"....just stay away from the PANDAS label and its stigma. Here is a recent thread on insurance codes http://www.latitudes.org/forums/index.php?showtopic=5073

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Pixie was accepted into the study and we got the paperwork and vials yesterday. I'm not sure if she is having a flare-up right now or not. She is complaining of mouth sores and sore throat, headache and stomach-ache, but she is also reacting to a med change. Also not seeing rages from her, but her SPD is definitely through the roof. We have a regular ped checkup for her on Friday and I plan to get him to run a strep test just to check. Is it bad that I'm almost HOPING it comes back positive so I can go ahead and run the bloodwork? I know it doesn't have to be positive necessarily to run the bloodwork, but I guess I want to be SURE we're getting the blood drawn WHILE she is in an episode. Hers are pretty constant (although her "unexplained fevers" are more rare.) She typically runs cold and she was 99.1 today which is high for her, so I'm pretty sure she is starting... if I'm sure by Friday I will prob have the ped do the draw there if they will.

 

Did I just talk myself into it? :)

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Hi Folks,

 

Just a warning that Cunningham might be a bit slower in responding to requests around PANDAS. They didn't get funding for the brain/PANDAS research. They did get funding for their heart research but this means they sort of have to get back to that research.

 

Best regards,

 

Buster

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Well, we did the blood draw yestarday for the Cunningham test. DD is not at baseline, but not at her worst either. I don't want her to have pandas (but I know she does), but if the test were to come back negative, I would be LOST.

 

This seems like it is a definitive test. I guess if her numbers come back normal, we would re- run it if she were to get worse?

 

We are also on the first day of a 4 wk course of steroids (2 wks/ 2 wks tapering off). I guess by the end of all of this, we will have some answers.

 

I am a nervous wreck, and we are going on vacation!!!

 

:mellow:

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Well, we did the blood draw yestarday for the Cunningham test. DD is not at baseline, but not at her worst either. I don't want her to have pandas (but I know she does), but if the test were to come back negative, I would be LOST.

 

This seems like it is a definitive test. I guess if her numbers come back normal, we would re- run it if she were to get worse?

 

We are also on the first day of a 4 wk course of steroids (2 wks/ 2 wks tapering off). I guess by the end of all of this, we will have some answers.

 

I am a nervous wreck, and we are going on vacation!!!

 

:mellow:

 

Good luck to you. I felt exactly the same way. Not wanting them to have PANDAS but knowing it was true if the test came back negative I would have been lost as well. I hope you enjoy your vacation. Try to relax and have fun!!

 

Susan

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