any reason(s) to repeat Cunningham panel?

[wisdom_seeker]

DS had done the Cunningham panel 8 months ago. CAMKII = ~184, Tubulin borderline, all else low. Responded well (~60%) to steroids; had a 60mg (<1mg/kg) prednisone burst 7ish weeks ago.

 

I'm wondering about any tests to do pre-IVIG, tests that would get messed up by the Ig infusion. So what about the Cunningham panel?

 

What is the likelihood that our results would be much different? That some other autoantibodies would be high on a re-test? Would insurance be more likely to pay for IVIG if some autoantibodies were high?

Would it show us anything about the odds of IVIG working, or likely side effects from IVIG? Either of those would be reasons to re-do the test. I know nothing's been published about that, but perhaps your MDs have said anything? Or you've seen some patterns?

[jan251]

You would have to ask your doc about the CamKII and the odds of IVIg working. I think our doc took it as just another bit of info that yes, this is PANDAS/PANS, but like you said, nothing has been published specifically connecting CamKII and IVIg as far as I know. I am listening in here to see if anyone has heard anything on this.

 

Unless you have unusual insurance, I think you need to let go of the idea that insurance will pay for IVIg for PANDAS and therefore that a high CamKII would be relevant to insurance.

 

I can't imagine there would be any need to repeat the Cunningham Panel at this point in time. The only change you have would be response to steroids and the whole reason you'd even be considering IVIg is that there's a need for further treatment, yes?

Edited September 9, 2016 by jan251

[wisdom_seeker]

No, PANDAS is a clinical diagnosis, and insurance and MDs like to see objective measures.

 

It's when we got the high CAMKII, all MDs became comfortable conceptualizing what he had as an autoimmune encephalitis. However PANS is still in his medical record, and that alone seems to have been enough to disqualify him from having IVIG covered :-(.

 

The CAMKII is an indirect measure by a cell stimulation assay our insurance doesn't recognize (unlike the direct autoantibody assays).

 

I've been hoping (fantasizing??) that if we find specific antineuronal auto-antibodies obviously elevated then insurance would accept a Dx of autoimmune encephalopathy due to _____ (say antitubulin), and cover IVIG to treat that. But I've never walked this road before.

 

I know there are many here whose kids have had elevated autoantibodies. I don't know if it made any difference.

 

[Louisa]

No, PANDAS is a clinical diagnosis, and insurance and MDs like to see objective measures.

 

It's when we got the high CAMKII, all MDs became comfortable conceptualizing what he had as an autoimmune encephalitis. However PANS is still in his medical record, and that alone seems to have been enough to disqualify him from having IVIG covered :-(.

 

The CAMKII is an indirect measure by a cell stimulation assay our insurance doesn't recognize (unlike the direct autoantibody assays).

 

I've been hoping (fantasizing??) that if we find specific antineuronal auto-antibodies obviously elevated then insurance would accept a Dx of autoimmune encephalopathy due to _____ (say antitubulin), and cover IVIG to treat that. But I've never walked this road before.

 

I know there are many here whose kids have had elevated autoantibodies. I don't know if it made any difference.

 

Can anyone share their experience in IVIG?

 

My son did not respond well with antibiotics and prednisone for his OCD. Dr T. and my son's psychiatric nurse practitioner suggested IVIG may be the next step.

 

Thanks

[sf_mom]

Steroid use can impact CamKII result..... arbitrarily lowering. You might call lab to discuss length of time of steroid use verses testing.

 

Repeat IgG Subclass testing, if deficient, will be sufficient to get IVIG approval for CVID.

[Rachel]

I agree with sf above. Repeat that testing first. The first time my son had the Cunningham test, everything was in a normal range. The second time my son had the test, he had a double ear infection. Strep plays a part in ear infections. His test showed Cam Kinase II at 234 and Dopamine 1 receptors at 4000, D2 8,000,Lysogangliosides 320, and Tubulin 1000. On the first test my son had the titer levels were exactly 1/2 of the levels except for his Cam Kinase which was at 119. Just my personal opinion about the Cunningham test but an infection will cause the antibodies to rise. I would only have my son do this test again during an infection and when his symptoms are through the roof. For us, having a baseline test was good because my son's cardiologist was able to prove that the antibodies were making his POTS symptoms worse.

[wisdom_seeker]

I agree with sf above. Repeat that testing first. The first time my son had the Cunningham test, ....For us, having a baseline test was good because my son's cardiologist was able to prove that the antibodies were making his POTS symptoms worse.

So to clarify, you agree to repeat the IgG subclass testing? And the Cunnningham ONLY when he's actively ill (with strep)?

 

DS gets many viral infections, though now that he's on abx prophylactically, they haven't turned into bacterial sinusitis any more... He does get a flare with each infection, and then refuses to go anywhere near needles. So his baseline Cunningham was a week before one of the flares, 3 weeks after a prednisone burst, as healthy as we could get him.

[Rachel]

That's just my personal opinion about the Cunningham test because of what happened in my son's situation. My son is also on 250 VK penicillin daily. Not sure if a prednisone burst would interfere with those new results either. My son could not tolerate high doses or low doses of prednisone. It made his vocal tics worse. But if your son got a major infection and symptoms went through the roof, that's when I would recommend another Cunningham Panel especially if antibiotics are not helping.