Cunningham CaM Kinase II

[momaine]

I emailed at the following email 'Madeleine-Cunningham@ouhsc.edu' Is this the correct email? I only emailed yesterday morning so maybe I haven't allowed enough time for a response. Just wanted to make sure I used the correct email. I just dug it up on-line and wasn't sure if it was an old address or not. Also, is there a web site about the testing?

 

Thanks.

 

Angela

[CandKRich]

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Edited August 12, 2013 by CandKRich

[justinekno]

When you email her, what information should you include? Does she want any kind of history?

 

Angela,

 

That is the correct email. My experience is that she is very prompt in responding, so you should hear back in a timely manner. She will email you back and then also inlclude information to you about the study in the form of email attachments. As far as I know, there's not a specific website about the testing/procedure.

 

Take care,

- Karen

 

 

 

 

 

I emailed at the following email 'Madeleine-Cunningham@ouhsc.edu' Is this the correct email? I only emailed yesterday morning so maybe I haven't allowed enough time for a response. Just wanted to make sure I used the correct email. I just dug it up on-line and wasn't sure if it was an old address or not. Also, is there a web site about the testing?

 

Thanks.

 

Angela

[thereishope]

This is one of the earlier threads on the Cunningham blood tests...it's pretty informative http://www.latitudes.org/forums/index.php?...gham+blood+test.

 

Also, here is a link to the full text of the 2006 JNI paper that has the graphs with CaM kinase levels of PANDAS (vs. SC, tics, etc.) kids. http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf (Figures 3a and 3b are the most helpful.)

[justinekno]

I sent an email to Dr. Cunningham mentioning my son's tics, ocd tendencies, high anxiety and our family history of Scarlet & Rheumatic Fever, Autoimmune Disorders and various strep infections. I also mentioned that we had recently tried my son on an antibiotic and that there was "some" improvement. I was basically asking if she thought my son would be a good candidate for the test.

 

Her response was that if the symptoms are not major and you get results from the antibiotic, doing the blood test would be entirely up to me - she could not say if it would be beneficial. She went on to say that she did not know what we would find if anything if there are very mild symptoms and if it has gone on for a long time. I guess I was somewhat surprised by her response, although I certainly appreciate her honesty. She did preface her thoughts by saying she could not say whether or not we should do the test. I was surprised because if you read her parent letter, it mentions about the elevated neural antigens which are commonly found in kids with PANDAS, Tourettes and Sydenham chorea. She goes on to say that they are interested if you have a history of RF, which we do.

 

Has anyone had any similiar experience/response? Now I'm second guessing my initial decision to have my son do the blood test. So frustrating

[thereishope]

Well, may I ask what would be your purpose for doing the test? Do you or your doctor have doubts it is PANDAS? Are you planning on seeing one of top experts (Dr K, Dr L, Dr T)?

 

Some may disagree with me, but if you are seeing consistent, good improvement on abx, you have a doctor on board who agrees your child has PANDAS and is willing to work with you, I agree that having the test done is up to you. If you feel you need/want more concrete evidence that it is PANDAS, then I would suggest doing it.

 

I think she cannot say if it would be beneficial because it is still in the research phase. Also, since she lost funding, the project has to charge a fee to have the test run. It counts as a donation.But because of that, I understand why she cannot say the test is a necessity for PANDAS. If she did that, a lot of criticism could surface in the future. So I think that's smart of her to say it.

 

 

I have not had the test done on my son. He is clear cut PANDAS. There's no reason for doubt. He has improved on abx. Also, he is not in an exacerbation and I think it is best to test when they are or if you are keeping track of results over time and doing the test more than once.

[peglem]

I was surprised because if you read her parent letter, it mentions about the elevated neural antigens which are commonly found in kids with PANDAS, Tourettes and Sydenham chorea. She goes on to say that they are interested if you have a history of RF, which we do.

 

What is this parent letter of which you speak?

 

I can see where Dr. Cunningham can't make any claims or recommendations yet about the testing- its still a study only.

[justinekno]

Oh, I definitely don't hold anything against her for not wanting to say if I should go through with the test. I completely understand her reasoning. It just got me thinking that it may not be as useful as I was hoping it would be - in our case.

 

We have not had much success with the pennicillen that my son has been on for the last week. Our dr is familiar with PANDAS but not one of the "experts". We are not 100% sure that it's PANDAS but alot of the signs point in that direction. But as we all know, the same signs can point to many other things too. I am just anticipating our next move and thought the blood test might be an option which I understand it still can be but now I'm just not so sure. Can it ever be easy?

 

We don't really have exacerbations that everyone speaks of. My son's tics and other issues pretty much stay the same - maybe some days more than others but nothing extreme.

 

The parent letter is an attachment she sends in response to the email sent.

[thereishope]

I don't remember what I've mentioned in other threads with you so forgive me if I'm repeating myself.

 

I don't think you can fully judge if the antibiotics are making a difference and backing up whether or not it's PANDAS based on penicillan. Unfortunately, too many kids on this forum did not have success on penicillan. Many did go onto to diffrent meds and saw great strides.

 

As for the test, even if you don't going through some of problems others are experiencing, it is still not acceptable for your child to suffer at all. I don't want anyone to ever think that their child is viewed different on here because they are more mild. Each child is important and each child deserves the chance at recovery.

 

So, you have a decision to make. You could order the test and have it handy and ready to go. I believe the donation is made when you submit the blood sample. If you see an upswing of tics or behaviors surface (whatever is considered an upswing for your child...not compared to others on here), that's when you get the blood test done. I just get the feeling you, personally, need/want to see it in writing (or type) that your child falls in the PANDAS range. A lot have done that test for that reason alone. Nothing is wrong with that. If your child does fall in the PANDAS range, it may help you with even local doctors. I don't know fully if it will. But, if you go onto to seeing one the experts (in person or via phone) they understand the test and the results will help you with a consult as well. It is alos important to remember that when anyone participates in this study, you are helping ALL PANDAS kids, For that, I thank each of you who has participated.

 

Something to remember is the test should be done prior to any steroids. Steroids may alter results.

 

If you want my personal opinion, order the test and think on it more while waiting for delivery.

[justinekno]

Thank you for the advice and supportive words. You are right on about my need for something in writing about PANDAS! I am still waiting to hear back from our dr (the nurse has NO sense of urgency) about perhaps trying a different antibiotic. I have left another "firm" message this morning. I wonder if the Cunningham test results are affected by being on an antibiotic.

 

 

I don't remember what I've mentioned in other threads with you so forgive me if I'm repeating myself.

 

I don't think you can fully judge if the antibiotics are making a difference and backing up whether or not it's PANDAS based on penicillan. Unfortunately, too many kids on this forum did not have success on penicillan. Many did go onto to diffrent meds and saw great strides.

 

As for the test, even if you don't going through some of problems others are experiencing, it is still not acceptable for your child to suffer at all. I don't want anyone to ever think that their child is viewed different on here because they are more mild. Each child is important and each child deserves the chance at recovery.

 

So, you have a decision to make. You could order the test and have it handy and ready to go. I believe the donation is made when you submit the blood sample. If you see an upswing of tics or behaviors surface (whatever is considered an upswing for your child...not compared to others on here), that's when you get the blood test done. I just get the feeling you, personally, need/want to see it in writing (or type) that your child falls in the PANDAS range. A lot have done that test for that reason alone. Nothing is wrong with that. If your child does fall in the PANDAS range, it may help you with even local doctors. I don't know fully if it will. But, if you go onto to seeing one the experts (in person or via phone) they understand the test and the results will help you with a consult as well. It is alos important to remember that when anyone participates in this study, you are helping ALL PANDAS kids, For that, I thank each of you who has participated.

 

Something to remember is the test should be done prior to any steroids. Steroids may alter results.

 

If you want my personal opinion, order the test and think on it more while waiting for delivery.

[momaine]

Someone from The Cunningham study did write back and said, "The steroids will decrease the immune response but you will need to decide if you want the testing." Does anyone know if that affects all aspects of the study (they check more than one level, right?)or if it would likely take a child who was positive and put them in the negative range or likely just take them from a possible high level to a lower level? I'm just trying to decide if we spend money on this if it might come out negative anyway due to steroids.

 

Has anyone done it after having steroids in the past month?

 

Angela

[jayjay]

Someone from The Cunningham study did write back and said, "The steroids will decrease the immune response but you will need to decide if you want the testing." Does anyone know if that affects all aspects of the study (they check more than one level, right?)or if it would likely take a child who was positive and put them in the negative range or likely just take them from a possible high level to a lower level? I'm just trying to decide if we spend money on this if it might come out negative anyway due to steroids.

 

Has anyone done it after having steroids in the past month?

 

Angela

I Just got the results of the Cunningham test back for my son. His blood was taken on day 15 of a 21 day steroid boost and while on Augmentin. It came back at 150 (right in the middle) The Dr. agreed that it probably had been higher. I know this probably doesn't help with your decision, but it did still come back positive even while on meds.