Cunningham Test

[Mary M]

May I ask:

 

Given that the Cunningham tests are not currently used as diagnostic tools...but you chose to have them performed for your own purposes--

 

If you had the Cunningham tests drawn for a child you suspected as having PANDAS did the CAm KinaseII and/or antineuronals

1) CONFIRM your personal observations about PANDAS or

2) REFUTE your suspicions of PANDAS?

 

I appreciate your responses.

Mary

[peglem]

It confirmed for us. And at a time when the only official info on PANDAS treatment was "treat it the same as regular OCD and tics, it got our pediatrician (who was already convinced it was PANDAS) moving and in touch with the experts. We had no other labs indicating that there was something amiss and these results helped him to get the assistance of specialists that had just blown us off before.

[SSS]

I am awaiting our CAM results, but, the DAN! Dr. we have been working with (just for 3 months now) said to me yesterday, 'She fits PANDAS to a 'T'!

I am about 90% there, but I do need to see the CAM results. I have always been one to like testing to help me get a clearer picture of what is happening in the body.

Also, w/ the test, I will make a copy of that, along with something from our DAN! to present it to our insurance Dr.'s (whom I gave up a long time ago to try and help my dd5)

and demand they start helping me. (good luck, right?)

But I am draining my retirement account.

 

And by the way, if the test is clearly a No, then I also have a clearer path- and need to take a different direction with her OCD and Anxiety Disorders.

Edited January 19, 2011 by S & S

[nicklemama]

It was confirmation. DS has negative titers and no documented case of strep. His symptoms fit the PANDAS pattern and he responds well to antibiotics. Dr T did not require the test for diagnosis. It was for my peace of mind (if you can be at peace that your child has PANDAS).

 

Cindy

[Phasmid]

Who knows, since none of my son's physicians have anything to go on since there hasn't been final word on what the results mean!

[KaraM]

It brought us from thinking she had a 5% chance of having PANDAS to 95% chance. It gaves us ammunition to present to our pediatrician to start treating her for an infection. The improvement on antibiotics and an ultimate diagnosis from Dr. B. confirmed it 100%.

[norcalmom]

Confirmed. Actually, if they came back negative, I probably would have headed down a completely different path. We had no known strep infection, or titers.

[Fixit]

both...

did 2 draws...

1st one he was not in exasperation..pretty mild tics, but not 100%..and to me his reading was not in "normal range" and that should be the clue...luckily doc k doesn't rely on that test and relies more on history ..and gave me confidence to push...which i probably would have anyway, once i picked myself up, based on my ds prior history and i know what i have witnessed the years prior

2nd ,,almost or was full sc body type movements, vocals..nearly incompasitated....

 

i wuold hate for a child to be that severe before being diagnosed!!

 

i don't feel need to test other children..it runs in families and all episodes are with illness....

i hope they use as guide...and go same route they have with lupus and ms..though i hope and affirmatory test comes in ...or they read what they have with a wider scope.

[Mary M]

Thank you for your responses. I have asked because I want to recommend the Cunningham test to a family who is questioning PANDAS but just isn't sure. Since it is expensive, I wanted to learn if others, besides us (our own experience with the test results for our dd totally confirmed what we thought must be PANDAS and the results arrived in my inbox the same day as our intial consult with Dr K-who confirmed PANDAS clinically). I just wasn't sure if our experience was common or not.

Thank you,

Mary

[GraceUnderPressure]

For us it was a form of reassurance as well as a chance to contribute to Dr. Cunningham's research. Our PANDAS dr. had already decided to try treatment for our son based on his clinical presentation so he just shrugged when our results came in, but for us (now that we have settled what ds's numbers mean) it reassures us that we ARE on the right track & we feel a bit more comfortable trying the antibiotics & ivig than we did before.