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Cunningham Test


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6 replies to this topic

#1 worriedmommy

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Posted 09 April 2010 - 07:41 AM

I just received a reply from Madeline Cunningham today saying that she'll send out the test kit. My question is, how long does it take to get the kit, and can you simply walk into your local lab to have the blood drawn?

dd was on a 20 day course of Biaxin in March, during which she showed remarkable improvement in behaviors, anxiety and tics. She's been off for 2 weeks, and while she's not as bad as she was pre-Biaxin, she's much worse than while on the Biaxin. Dr. T had her on a motrin regemin for the last week, which didn't help much. Our next step is azith with a prednisone burst, but before we start that I want to have the Cunningham test. I don't want any abx or steroids affecting the test, so I see this as our window to do it.

Can anyone tell me how long it took to receive the test? Also, was there difficulty in getting a lab to draw the blood?

Finally, is there anything else that can affect the testing. Dd is having an endoscopy on the 14th, and will be under general anestesia (sp?) for it. I want to be sure that won't be an issue.


#2 ajcire

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Posted 09 April 2010 - 08:16 AM

I don't know all the answers to your questions but I can answer a few :(

The cunningham kit showed up within days. I don't think most people had success getting their lab to do it.. some said they had a good relationship with them and were able to. I asked my pediatrician to do it and thankfully he was very happy to help me. If you have an open minded ped I would ask them if they would be willing to do it for you.

Then right after I packaged it up and went to have it overnighted back. Dr. Cunningham's team really has it all set so that it's really easy to follow what they want you to do.


I just received a reply from Madeline Cunningham today saying that she'll send out the test kit. My question is, how long does it take to get the kit, and can you simply walk into your local lab to have the blood drawn?

dd was on a 20 day course of Biaxin in March, during which she showed remarkable improvement in behaviors, anxiety and tics. She's been off for 2 weeks, and while she's not as bad as she was pre-Biaxin, she's much worse than while on the Biaxin. Dr. T had her on a motrin regemin for the last week, which didn't help much. Our next step is azith with a prednisone burst, but before we start that I want to have the Cunningham test. I don't want any abx or steroids affecting the test, so I see this as our window to do it.

Can anyone tell me how long it took to receive the test? Also, was there difficulty in getting a lab to draw the blood?

Finally, is there anything else that can affect the testing. Dd is having an endoscopy on the 14th, and will be under general anestesia (sp?) for it. I want to be sure that won't be an issue.



#3 kcdc3

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Posted 09 April 2010 - 10:12 AM

[quote name='worriedmommy' date='Apr 9 2010, 08:41 AM' post='62736']

dd was on a 20 day course of Biaxin in March, during which she showed remarkable improvement in behaviors, anxiety and tics. She's been off for 2 weeks, and while she's not as bad as she was pre-Biaxin, she's much worse than while on the Biaxin.

Is there any reason why Dr. To would not want her to continue on the Biaxin if you saw the improvement and then the downslide while off?

#4 peglem

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Posted 09 April 2010 - 10:32 AM

As far as medications affecting the test- email Kathy Alvarez and ask. I think perhaps the pred. burst has an effect on test results, but think that abx does not affect. But, I'd ask the lab to be sure- no use your child being miserable if you can ease the symptoms.

-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.


#5 worried_dad

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Posted 09 April 2010 - 11:13 AM

Our family doc was no help - he refused to do the blood draw or order it, saying that Dr. Cunningham needed to do that. So I went next door to the hospital lab where the bloodwork is done. As soon as I explained it was for a research study and showed them the paperwork, they just said "oh, we'll do this for you for free, just stop by anytime."

So we walked in, they drew the blood, spun it to serum, and gave the serum vials back to us with no hassle. We just packed 'em up in the kit per instructions and sent 'em back to OUHSC. Not bad!

#6 tapiash

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Posted 09 April 2010 - 12:05 PM

I just received a reply from Madeline Cunningham today saying that she'll send out the test kit. My question is, how long does it take to get the kit, and can you simply walk into your local lab to have the blood drawn?

dd was on a 20 day course of Biaxin in March, during which she showed remarkable improvement in behaviors, anxiety and tics. She's been off for 2 weeks, and while she's not as bad as she was pre-Biaxin, she's much worse than while on the Biaxin. Dr. T had her on a motrin regemin for the last week, which didn't help much. Our next step is azith with a prednisone burst, but before we start that I want to have the Cunningham test. I don't want any abx or steroids affecting the test, so I see this as our window to do it.

Can anyone tell me how long it took to receive the test? Also, was there difficulty in getting a lab to draw the blood?

Finally, is there anything else that can affect the testing. Dd is having an endoscopy on the 14th, and will be under general anestesia (sp?) for it. I want to be sure that won't be an issue.

I went into our hospital lab with the kit, letter and conent forms. After they figured out how to bill me and register my son, I walked over to the lab with orders and they drew the blood. I had no problems at all. We live in a very rural area and the hospital has drawn all of my sons blood. We are regular's over there. They were intrigued and wanted to know more about the reason behind the unusual tests. I also call and bug daily for the results, so a relationship is a big key.
Shirley

#7 kimballot

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Posted 09 April 2010 - 07:10 PM

I just had my son's drawn on Monday. We use Quest and I called the local main office beforehand to explain. They were fine with it and did it for free as long as it was for research and as long as the shipping was prepaid (it was - the Cunningham lab takes care of that). Just freeze the icepack, sign your consent forms, write up a brief history and put it all in with the blood. The biggest challenge for the lab was how to label the tubes, since they did not have printed labels - they just put blanks on and hand - wrote his name.

Be sure to do the blood draw early in the week. We had ours drawn Monday at 9 am and it did not get to Kathy until 10:45 on Wed. One more day and it would not have been cold any longer. If we drew on Thurs. it would not have gotten there until Sat. and they are closed over the weekend.

Edited by kimballot, 09 April 2010 - 07:11 PM.

Parent of teenager with PANS from young age. Mild primary immune deficiency. Chronic sinusitis. Possible bartonella,  Antibiotics.  IVIG. History of severe exacerbations.  Continues to show improvement. There is hope for our children.  Let's work together for early identification and treatment!





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