Jump to content
ACN Latitudes Forums
Sign in to follow this  
worriedmommy

Cunningham Test

Recommended Posts

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

 

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?

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  



  • Announcements

    • Administrator



      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator



      Disclaimer

      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010
  • Help us learn if blood type has a correlation with PANDAS/PANS   78 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


      • O +
      • O -
      • A +
      • A -
      • B +
      • B -
      • AB +
      • AB -
      • I Don't Know

    Please sign in or register to vote in this poll. View topic
×