Confused about Cunningham results

[Betty04]

Hi,

 

I just received the remaining lab results today from Cunningham's lab. My son's CaM Kinase is 142. So that puts him in the PANDAS category on that test but I think all the other results we received are negative? So does this mean he does not have PANDAS. Or are the numbers low because he is young, 5 years old? Or is it because we never had a positive strep test just positive results from antibiotics.

 

Thanks for any feedback!

 

Here are the results that were emailed today:

 

Anti-neuronal Antibody Titers

 

Anti-Lysoganglioside 2 hours

patient 80

positive control >1280

negative control 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 2 hrs

patient 250

positive control 16000

negative control 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 2 hours

patient 1000

positive control 8000

negative control 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 2 hours

patient 1000

positive control 16000

negative control 2000

normal range 2000-16000

normal mean 6000

[mama2alex]

I don't know of any other illness with psychiatric symptoms which responds well to antibiotics other than PANDAS. So I think you are on the right track. Maybe you can email Kathy Alvarez to get more info on why he might have high Cam Kinase but normal anti-neuronal antibodies. My son had Cam Kinase of 153 and was only in the high range for anti-lysoganglioside, but I never emailed her for clarification of what each anti-neuronal antibody results means.

[Betty04]

I don't know of any other illness with psychiatric symptoms which responds well to antibiotics other than PANDAS. So I think you are on the right track. Maybe you can email Kathy Alvarez to get more info on why he might have high Cam Kinase but normal anti-neuronal antibodies. My son had Cam Kinase of 153 and was only in the high range for anti-lysoganglioside, but I never emailed her for clarification of what each anti-neuronal antibody results means.

 

 

Thanks for the response. I think I will try to get in touch with Dr Cunningham to get her thoughts on my son's results. I would imagine they are still learning about the relationship between symptoms and antibody results?

[Iowamom]

Betty4-

 

Our son's CaM was 184% and the other tests were negative. I was confused and email Kathy and Dr. C. First, and foremost we were assured that our son has PANDAS. They don't necessarily "expect" the other ones to be elevated in PANDAS. They would expect them to be elevated in Sydemham's Chorea. The CaM activation is the "kicker" with PANDAS. She will give you a very good reply if you email her. Hope this helps. Dawn

[sf_mom]

Our son's CaM results were 124 and all other antibodies were fairly normal... One might have been slightly elevated after 3 hours. Anyway, he was 11 days post 5 day steroid burst and might have had some impact on results. I think CaM results plus clinical picture are equally important. Even with those numbers our son was TICing away. Our son is five and currently 98% better 5 weeks post IVIG.

 

-Wendy

[Betty04]

Betty4-

 

Our son's CaM was 184% and the other tests were negative. I was confused and email Kathy and Dr. C. First, and foremost we were assured that our son has PANDAS. They don't necessarily "expect" the other ones to be elevated in PANDAS. They would expect them to be elevated in Sydemham's Chorea. The CaM activation is the "kicker" with PANDAS. She will give you a very good reply if you email her. Hope this helps. Dawn

 

 

 

Thanks that is extremely helpful. No more confusion and I can sleep tonight... Thanks!