Highly Elevated Antibodies on 2nd Cunningham Panel Test

[Rachel]

Hi Everyone

 

I am a parent of a 13 year old son that has recently got back results on the Cunningham Panel. His antibodies came back highly likely for PANDAS. Recently, my son was seen by an immunologist in Texas that specializes in Autism and PANDAS. My son has not offically been diagnosied with PANDAS because his illness is progressive.

 

My son had vocal tic start after a sore throat (back in August 2010) but rapid step test came back negative. Six months later, my son had Mycoplasma pneuomia and the mycoplasma titer showed up out of range in blood work 2 months later. Since this illness my son's health has went down hill. He was diagnosed with Postural Orthostatic Tachycardia Syndrome in October 2011. My son has been on medications to help with POTS but his symptoms have continued to get worse when ever he gets sick with a virus or infection. This last year my son had several different test to check for other immune related illness. Last August in 2013, my son had his first Cunningham Panel Test. This first test result showed to be in the first gray area between unlikely and likely. About a month later, my son had a double ear infection and all his symtoms (vocal tics, hypersensitivity, headache, and scalp pain) went through the roof. My son is currently in a PANDAS study and the Cunningham Panel was ran again. This time all the antibodies were highly elevated. I was told that PANDAS is normally something that happens all within 24-48 hours. Can PANDAS be progessive? Or is this PANS?

Rachel

[pr40]

pandas has sudden onset. at least that was the early theory. your August 2010 can be considered this sudden event.

i am not sure what you mean by "progressive". PANDAS symptoms change over time for some kids. many cycle through symptoms. difference btw pandas and pans is in the trigger, if strep it is PANDAS, if not strep then PANS. PANS is also the more general category.

what study is your ds in? NIH?

[qannie47]

I think the Pandas community through time has definitely broadened it's thoughts on Pandas, and it's etiology. Where once thought only Strep, they are now finding a whole host of infections can be the culprit. Lyme, mycoplasma...and it makes sense. If a bacteria like Strep has the ability to cause havoc on a vulnerable immune system, other infections could as well. Pandas in my opinion is very progressive and I think that is the main problem with it. The disorder cycles through a whole host of symptoms that can seem unrelated, hence, we see children suffer for years before diagnosed. What can appear as a mild idiosyncratic expression like a simple vocal tic that suddenly disappears in a four year old for example, can turn up again age six as full blown Pandas, Pans. As the medical community embraces Pandas/Pans, and research yields more knowledge, I think these early symptoms are going to be examined and treated from a different perspective/approach. At least I hope so.

[Rachel]

My ds is in a PANDAS study with Dr. Cunningham at OU. I am waiting for the results of another test to check for the heart antibodies. At this time my ds is under the care of a cardiologist because he has problems with a high heart rate and low blood pressure . When my son's body would not respond to the POTS medications, our cardilogist has started looking for other causes. He is a cardiologist at Children's OU (Oklahoma University).

Rachel