Cunningham Blood Tests

[thereishope]

.

[citygirl]

Can Foot and mouth disease trigger PANDAS or OCD? Both my dd's got foot & mouth apparently (sort of diagnosed over the phone from nurse on call). My almost 3 yr old dd1 has been doing this hopping in her seat before starting her one TV show and sort of eye blinking thing, not sure if her eyes are itchy and bothering her from the virus (mine and husband's have been itchy these days too). She just got over a cold a few weeks ago, and shortly after shed showed above symptoms. Now she possibly has foot & mouth thing. She's so miserable - sores all over her mouth! I feel like her body's a wreck right now...

[EAMom]

Can Foot and mouth disease trigger PANDAS or OCD? Both my dd's got foot & mouth apparently (sort of diagnosed over the phone from nurse on call). My almost 3 yr old dd1 has been doing this hopping in her seat before starting her one TV show and sort of eye blinking thing, not sure if her eyes are itchy and bothering her from the virus (mine and husband's have been itchy these days too). She just got over a cold a few weeks ago, and shortly after shed showed above symptoms. Now she possibly has foot & mouth thing. She's so miserable - sores all over her mouth! I feel like her body's a wreck right now...

 

Any illness (virus, bacteria, even allergies, stress) can trigger PANDAS symptoms. The initial trigger which starts everything (sets the wheels in motion) is thought to be GABHS. However, subsequent exacerbations can be caused by non-strep illnesses, for example, my dd has reacted to H1N1 and fifth's dz. If this is your dd's first PANDAS episode, it is likely that there was a previous (undiagnosed) episodes triggered by strep. THis episode may have been mild/transient...OCD, urinary issues, anxiety, adhd, mood lability, sensory issues etc.

 

This is from Swedo's first 50 cases paper:

Two clinical notes should be made. First, not all

symptom exacerbations were preceded by GABHS infections;

viral infections or other illnesses could also

trigger symptom exacerbations. This is in keeping with

the known models of immune responsivity—primary

responses are specific (e.g., directed against a particular

epitope on the GABHS), while secondary responses

are more generalized. Thus, the lack of evidence for a

preceding strep infection in a particular episode does

not preclude the diagnosis of PANDAS.

Are they treating the sores with antibiotics?

 

It might be worthwhile also to throat culture everyone in the familiy to check for strep carriers/assymptomatic strep. Lots of PANDAS kids get strep with no symptoms other than behavioral changes (no sore throat/no fever).

 

BTW...you might re-post this question under a new topic (it's kind of buried, I think nobody saw it!)

[thereishope]

Since there are many new people I thought I'd bump up this thread about the Cunningham test. That way if they are interested they can read more about it.

[EAMom]

Bump and update:

 

The Cunningham Test ("test for PANDAS") is now commercially available in most states.

 

http://www.moleculera.com/

[Chemar]

Bump and update:

 

The Cunningham Test ("test for PANDAS") is now commercially available in most states.

 

http://www.moleculera.com/

Could you add that link to the Helpful thread

http://www.latitudes.org/forums/index.php?showtopic=3928

[EAMom]

Good idea Chemar, done.

[JoyBop]

Question....I live in a state where the test is not authorized. Can I still have it done if I take my child to another state to see a PANDAS dr?

[4Nikki]

Sorry for this, It is not meant to offend. So lets say that DD takes this test and it comes back and say "Highly Likely" PANDAS/PANS. Is it some sort of paper that I'm going to wave in every specialty Dr.'s face. I have a test that says DD has PANS please fix my DD. What is the point? Every specialty Dr. is going to want run their own test to verify numbers when prescribing treatment. I already know DD is sick. I want to know is it the bacteria, a virus or something else. I wants to know specifics. Where is the value in getting a general opinion? I read some postings about 23andme and took a look at the site. That to me provides something tangible. If I can use the Cunningham Panel results to get approval for IVIG or other treatments from DD insurance then it has lots of value. But I'm thinking it's DD history that gets the approval. Maybe I'm just not understanding the whole thing because I'm so tired of working so hard to help DD keep control.

[kthomas]

I have the test kit sitting on the counter and am contemplating when to have the blood drawn. DS8 has been on azithromycin 250 mg daily for almost 1 year and right now he is about 85%. Will the kamkinase levels show if the child is not in an exacerbation? I would like to use the results as a tool to show the insurance company that ds has PANDAS. He was turned down for IVIG by BCBS. Should I wait till he has a flair or go ahead and do it now?

[T_Anna]

JoyBop, you're patient address that your doctor enters into their system needs to be an ok'd state. You also will prob not receive any insurance coverage.

 

T.Anna

[EAMom]

4Nikki and Kthomas

 

Dr. T (NJ) did mention on one of the radiopandas shows that the test may help PANDAS kids get insurance coverance for IVIG. It was also mentioned the test may be useful to monitor treatment/recovery.

 

We ran the test (more than 1x) a few years ago (when this thread was started!) as part of the research study. We found the test very useful for a number of reasons.

 

1) It was the ONLY blood test that showed anything abnormal for us (my dd had always had low strep titers, even with positive cultures, and OCD severe enough to require hospitalization.)

 

2) The first time we ran it, we didn't consider our dd to be in an exacerbation. She was back in school full-time, pretty functional, but we were watching her "baseline"...she wasn't symptom free, but no where near nightmare we had experienced 1 year before. She was had been on antibiotics for a year and we were hoping to proceed to IVIG to further her healing and avoid some baseline change. She came back in the "high PANDAS range" 160's while NOT in an exacerbation. This was enough to convince our somewhat skeptical local Stanford U. immunologist to authorize IVIG for us. Without the test, we would have had to fly to Chicago (from CA) for IVIG with Dr. K. Thanks to the test, we were able to have IVIG 1/2 hour form our house and in-network (so at the time, we easily got insurance coverage). I should note that our immunologist already knew of Dr. Cunningham and respected her work greatly. So, we didn't have to spend a lot of time "explaining" what her research was about to him.

 

3) Just before IVIG was scheduled, our dd contracted H1N1 and went into an exacerbation. Curious, we repeated the test. She came back in the high SC range, the highest Dr. Cunningham had ever seen (250 something). Well, if nothing else, that really solidfied in our mind that IVIG (which we had debated for 1 year) was the "right choice". Our first IVIG was a big deal for us, we were pretty nervous and it was good to have a very objective confirmation (aside from "parental observation" which honestly only goes so far in the medical world) of her illness and need for treatment beyond antibiotics.

 

4) To a certain extent we probably "lucked out" that our dd was such a severe case and tested so high when not in an exacerbation (and "off the charts" when in one). In general, I would recommend waiting for an exacerbation, it will come. (Definitely avoid steroids or IVIG before doing the test as it will alter results.)

 

 

My understanding is that about 1000 kids were in that study we participated in (that's a lot) and a paper will be forthcoming. In addition, there are already 2 published papers on this. This is from PANDASnetwork.org: http://pandasnetwork.org/testing_outcome/diagnostic-tests/

 

A test to help determine the likelihood of the patients condition being auto-immune in nature, including possible PANDAS, is commercially available by Moleculera Labs. This test is derived from the research done by Dr. M. Cunningham.

Dr. Cunninghams research measured cross-reactive antibodies that are elevated in a PANDAS childs brains. Many children got assistance with PANDAS treatment from Immunologists if the results of this blood test indicate PANDAS-like antibody levels. This study was conducted at the University of Oklahoma.

In the following studies by Dr. Cunningham, et al., they show that movement disorders in Sydenham Chorea patients a movement problem caused only by strep and PANDAS children are similarly elevated. In both illnesses the basal ganglia are activated by a negative autoimmune reaction to strep.

This is important to show doctors so they understand that your child is not simply suffering from a psychological issue and may be having movement or mood issues due to strep antibody cross-reactivity from auto-antibodies (misbehaving antibodies along the basal ganglia nerves) called anti-lysoganglioside and anti-tublin.

Kirvan, et al (2003) Mimicry and Auto-antibody mediated neuronal Signaling Cells in Sydenham Chorea.

And, Kirvan, et al (2006) Antibody-mediated neuronal cell signaling in behavior and movement disorders.

PLEASE: See page 3 figure a. showing elevation in PANDAS children at Acute Stages of Exacerbations.

 

The test is also going to be used on the kids in the current NIMH IVIG trial, which IMHO adds even more credibility to this test.

 

Realistically,the LEAST important scenario to run the test would be if you are already getting top notch treatment from a PANDAS doc, and there is no doubt of the diagnosis, and you do not forsee the test being useful in terms of monitoring recovery or obtaining insurance coverage for IVIG.

 

vs.

 

Probably the MOST important time to run the test would be when PANDAS is still an uncertain diagnosis, and your PANDAS doubting doctors are trying to say your child is "garden variety Tourettes" or "garden variety OCD" (or bipolar, or a kid with a long history of an alphabet soup of diagnoses) and should be treated with psych drugs, not antibiotics/IVIG.

 

I hope that helps!

Edited May 29, 2013 by EAMom

[4Nikki]

Thank you EAMom. it does help.

[EAMom]

I should add that even if you are "lucky" enough to have a child with elevated strep titers (or a positive throat culture etc) there is the "Kurlan/Singer" naysayer camp that will snidely say "strep infections are as common in childhood as eating pizza, maybe it is pizza that is the cause of your kids OCD."

 

This test circumvents that whole naysayer argument...not that looking for identifying a trigger isn't important for our kids. Unfortunately finding evidence of a infectious trigger plus mom's saying "I think my kid has PANDAS, he has all the symptoms" still isn't enough proof of an autoimmune cause of OCD/tics/mental illness for these doctors. The Cunningham Test is that proof.

[kthomas]

Thank you EAMom. My son does have a PANDAS dx from Dr. I. in San Antonio so it isn't need to prove to a dr. but more for insurance purposes. I will wait for an exacerbation to run the test. Thanks for the information and input. One more question - if the PANS/PANDAS is brought on by lyme will it show?