2nd PANS child, first round of tests: Igenex and what else?

[jph]

DS10 had severe PANS for many years. No testing ever turned up a trigger. We are finally doing Igenex this week.

 

DS4's sx just started within the last 9 months, and are mild. We've done no bloodwork yet. The first I'm doing is Igenex. Are there other tests I shouldn't miss while the needle is in his arm anyway?

 

I have the list we did through Dr. T for DS10 but it seems excessive considering nothing was found. I'm guessing DS4 would be the same. He's a very healthy kid. And with two kids in the same family with it, it almost has to be something genetic or like congenital Lyme, right? I'm doing the Igenex test also.

 

WWYD?

[putting together the piece]

Not sure about other testing but if you suspect congentital Lyme please consider provoking with at least 30 days of antibiotics prior to Ingenex testing. My kids were congenital Lyme and their systems were so weak from having been sick for so long that their first tests were negative with some indeterminate bands. After provoking with abx for 30days they were both CDC psitive. Could have saved myself the cost of that second test if I had known in advance.

[mama2alex]

Not trying to complicate things for you, but if you haven't yet given your younger one abx, you could do the Advanced Labs Lyme culture test. Even Igenex can return false negatives, as it did repeatedly in our case. With the culture, you know if there are spirochetes in the blood - you're not relying on an immune response. Then if that comes up positive, you can do the Igenex testing for co-infections.

 

Just a thought...

[PowPow]

My kids (4 with symptoms- two severe) all had different "triggers". One was strep, one turned out to have anti-phospholipid syndrome, one had sleep apnea (which was treated by a T &A, which led to finding tonsils had MRSA!) & we never figured out the fourth. One daughter did have Lyme & Babesia (cdc positive, quest labs, treated extensively by a previous president of ILADS) but we never tested the others and they all got better with individualized tx. My point is: look at this child individually and I, myself, would not jump to Lyme. It is potentially draining rabbit hole that may not help. We have been at this since 2008 & Lyme would be my last stop on the exploration train for these symptoms.

I am well aware that these words regarding Lyme are practically blasphemy to many of you. Sorry. Just my educated and experienced opinion.

Edited August 6, 2015 by powpow