help with Cunningham test

[aidansmom]

I just got my son's anti-neuronal antibody titers from Cunningham's Lab. All of his are in the normal range and even on the low side of normal.

 

Do the kids with PANDAS normally have high values on these?

 

What about Lyme?

 

We had got our CamK result at our appointment with Dr. B. last month and that number was 159. (I think I am remembering right.)

 

Does it matter if the child was in a exacerbation when the blood was taken?

 

Thanks

Elizabeth

[kimballot]

I just got my son's anti-neuronal antibody titers from Cunningham's Lab. All of his are in the normal range and even on the low side of normal.

 

Do the kids with PANDAS normally have high values on these?

 

What about Lyme?

 

We had got our CamK result at our appointment with Dr. B. last month and that number was 159. (I think I am remembering right.)

 

Does it matter if the child was in a exacerbation when the blood was taken?

 

Thanks

Elizabeth

 

I don't know exactly what the antineuronal antibodies mean and I don't know if the researchers do either at this point. I don't think there is any research published on it yet. My son had a CamK score that was similar to yours and I believe he was above the normal range in only one antineuronal antibody. I have lots of speculation as to what these antineuronal antibodies mean, but no facts yet. Maybe someone else knows more.

[sf_mom]

I can only share our experience and diagnoses

 

DS1: CaM Kinase 124 (blood was drawn 11 days post start of steroid burst), high end of normal on one antineronal antibodies catagory, ASO 244 at PANDAS on-set, confirmed Lyme via DNA testing, primary TIC presentation

 

DS2: CaM Kinase 148, high end of normal for one antineronal antibody catergory, no ASO or anti-DNase-B titers, various other abnormal labs, confirmed Babesia and Bartonells, IND Lyme, primary presentation of OCD and rages

 

DD: CaM Kinase 159, all normal antineronal antibodies, no ASO or anti-DNase B titers, various other abnormal labs identical to twin brother, serologically negative for everything, very low IgG1 and IgG3, primary presentation of high anxiety... severe separation anxiety (velco syndrome... had to peel her off DH and I), had delayed speech, often sick, rashes of all kinds, eye tic during illnesses, etc., etc, etc. She is very responsive to treatment. I think she may be our first off antibiotics but its only a guess at this point.

 

Hope that helps.

[nicklemama]

I was just talking to Dr T about this on Monday. My DS has one high anti neuronal antibody (anti tubulin). His CamK is 144. Dr T said they don't know what high anti-neuronal antibodies means, at this point. His blood was drawn 30 days into biaxin and he was doing really well, w/ most of his symptoms in remission. He has normal titers. Don't know if any of this makes any difference or not. I'm not sure if the experts even know.

[norcalmom]

I think a above normal CAM K and or antineuronal means your child is LIKELY to be experiencing an auto-immune reaction to an infection, OR may still have an active infection. (so, its PROBABLY not "tradiitonal" OCD or tourettes)

 

In the original study, she has several groups she was testing - SC, pandas, tourettes, traditional OCD, and ADHD. ONLY the SC and pandas groups had a high rise of CAM K. She doesn't talk about the antineuronals, except for lysoganglioside...which is the subject of the Antibody-mediated neuronal cell signaling in behavior and movement disorders paper (I can't remember if it is mentioned in the molecular mimicry paper or not, but is might be noted in there)..

 

but in that paper she shows that in all the SC patients, and 75% of the pandas patients there was way above normal anti-lyso. In the non-pandas group(this does not include "normal seras this time" jsut ADHD, tourettes, and OCD), only 23% were above normal, AND "LysoG concentrations required to inhibit binding or pandas sera to GlcNAC wer significantly lower than for non-pandas sera. The small percentage of non-pandas sera that were inhibited could be patients with undiagnosed overlapping syndromes".

 

ALSO - "pandas sera with the greatest GlcNAc inhibition did not neccessarily show the highest induction of CaM kinase Ii activity or lysoganglioside inhibition."

 

She used very small test groups for this study, and very narrowly definted for the pandas criteria.

 

Addtionally - there are LOTS of other anit-neuornals that they are not testing for. so, just becasue your child doesn't have any on the list she is curently looking for, doesn't mean there aren't some. She started with Lysoganglioside. Now she has added a few more. She started with SC, pandas, tourettes, traditional OCD, adhd and normal sera as her groups - now she had added more - lyme, active strep infection. (and I would imagine "viral stimulated" - ie PITAND). Lysogangliosde was previously identifed in SC patients (per her paper) that is why she started there. I'm pretty sure I heard her say (on the DVD for the latesst Autism ONE conference) that there are hundreds. She and her team picked a few likely canditiates and got lucky.

 

Hopefully the next study will have larger samples sizes and more groups listed. Thats why she wants our blood - why the study is still open - I'm assuming.

[eljomom]

kimballot---I would LOVE to hear your speculations about the antineuronals:) PM me if you want...

 

I just got my son's anti-neuronal antibody titers from Cunningham's Lab. All of his are in the normal range and even on the low side of normal.

 

Do the kids with PANDAS normally have high values on these?

 

What about Lyme?

 

We had got our CamK result at our appointment with Dr. B. last month and that number was 159. (I think I am remembering right.)

 

Does it matter if the child was in a exacerbation when the blood was taken?

 

Thanks

Elizabeth

 

I don't know exactly what the antineuronal antibodies mean and I don't know if the researchers do either at this point. I don't think there is any research published on it yet. My son had a CamK score that was similar to yours and I believe he was above the normal range in only one antineuronal antibody. I have lots of speculation as to what these antineuronal antibodies mean, but no facts yet. Maybe someone else knows more.