anti neuronal antibody titers

[Ellen]

Buster, thanks for your explanation. I have one question. Who are the controls from this study? Do they have Tourettes and OCD considered to be not autoimmune related or are they "normal" kids with no Tourettes or OCD at all?

 

Ellen

[colleenrn]

Buster,

As always, thanks for taking the time to explain the labs! I am still confused. I am waiting for the CamKinase results on my 3 kids, but would anti dopamine levels of 2,000 and 8,000 be considered high or very high? Also, my kids have been on 250mg of Zith for over 10 months, so would that make the values lower??

They have not done steroids though.

Thanks so much!

Colleen

[FallingApart]

Hi there,

 

I have 2 tubes of blood that we drew from before our steroid burst. Our ped would like to send them to Dr. Dunningham. Can someone tell me if I can still do this and how to contact this doctor? Also, the blood has been stored, so would it be allowed in this study or does it have to be fresh?

 

Thanks!

[Buster]

That's a really excellent question....

 

In Kirvan and Cunningham's 2006 papers it appears the controls were:

 

* non-PANDAS OCD (6)

* non-PANDAS tics (Tourettes, CTD and tics NOS) - (10)

* non-PANDAS ADHD - (10)

* non-PANDAS without neuropsych issues (i.e., normal) - (5)

 

Regards,

 

Buster

 

Buster, thanks for your explanation. I have one question. Who are the controls from this study? Do they have Tourettes and OCD considered to be not autoimmune related or are they "normal" kids with no Tourettes or OCD at all?

 

Ellen

[Buster]

Hi Colleen,

 

I found one paper where Prozac seemed to change the type of Cam Kinase II activation (see

http://www.nature.com/npp/journal/v32/n12/abs/1301378a.html). Not sure if this will affect results or not and have asked the lab about it.

 

I searched for affect of long term azith and I didn't find anything that indicated it affected these results. I think that's still a research area that would need to be controlled for.

 

In terms of anti-dopamine, as best I can tell, those values would fall into normal range -- presuming you sent D1 and then D2.

 

Regards,

 

Buster

 

 

 

Buster,

As always, thanks for taking the time to explain the labs! I am still confused. I am waiting for the CamKinase results on my 3 kids, but would anti dopamine levels of 2,000 and 8,000 be considered high or very high? Also, my kids have been on 250mg of Zith for over 10 months, so would that make the values lower??

They have not done steroids though.

Thanks so much!

Colleen

[sf_mom]

I think as long as its been spun and stored correctly....... it should be fine. I'd e-mail Kathy at Cunningham's office to confirm.

 

-Wendy

[pandas2boys]

Hi,

I received an email with the "antineuronal antibody titers" today from the Cunningham people, but can't make sense of them.

 

What are the anti-lysogalglioside (this is only one that looks really elevated for my son); anti-tubulin; anti-dopamine 1 and 2?

 

The anti-lyso looks really high but the others are only on the upper edge of normal range.

 

Do the Cam-Kinese come separately? Or are these the anti-dopamines?

 

Thanks!

 

Has anyone been in touch with Dr Cunningam's office as to how to understand what these numbers mean?

[FallingApart]

Can someone point me to the contact info for Wendy?

[sf_mom]

I sent you Kathy's e-mail at Cunningham's office in a private message.

[Iowamom]

Hello from Iowa! I posted some info I rec'd from Dr. Cunningham when I asked her some questions through email. It is in the topic "How do we interpret these results from Dr. Cunningham". Just thought I would pass this along. Dawn

[T_Mom]

Hello from Iowa! I posted some info I rec'd from Dr. Cunningham when I asked her some questions through email. It is in the topic "How do we interpret these results from Dr. Cunningham". Just thought I would pass this along. Dawn

 

Dawn--Your previous email info is very helpful! I have cut and pasted it here to add to this thread--hope that is alright.

T

Hello from Iowa! There are so many parents from the coasts. Just thought I would check in from the midwest for the first time. I will share more about our PANDAS saga in another post. It's a bit different, yet so much the same. We have lived it for as many years as PANDAS has been an acronym, but have danced around a true dx (alphabet kid) until last October. I have been in contact with Diana P. and we have been to Dr. K., and have been reading the forum frequently. I'll share more later. I thought I would throw in some explanations right from questions I posed in emails to Dr. Cunningham. I hope this is OK. In the first set I asked some questions and then she used my email and answered them. The other must have been an answer to some other question I had. I hope this is helpful. -Dawn

 

 

Is excessive CaM in and of itself hard on the brain/body??

 

The CaM is elevated inside neuronal cells and is not outside the cells.

We think that the antibodies trigger it.

 

Will IVIG take that out or will getting the strep antibodies out of the blood stop that.

 

IVIG is known to help but it's exact mechanism is not known. It provides immunoglobulins that may prevent infections which could help indirectly to prevent exacerbations. It may have other mechanisms.

 

Do the antineuronal antibodies fall as the strep titers recede because the CaM goes down?

 

This may happen but the anti-streptolysin 0 titers or anti-DNAse B titers could drop and the antibodies inducing CaM may stay elevated. They are not the same antibodies.

 

That there are any antineuronal antibodies is not good? High CaM, low titers---now what do we have or should do.

The high CaM indicates that your child may have antibodies that signal neuronal cells to release dopamine and cause the PANDAS. the other antibodies are not highly elevated and are within normal levels as you will see when you get the hard copy in the mail.

 

We are trying to study the symptoms and correlate with the test results.

 

I truly think he has battled this for years. Does his pattern (labs) match other kids that may have gone undx'ed for years?

 

Children with these diseases have one of them at least elevated. It is good that the anti-neural antibody titers are relatively

low and are in the normal range

 

Thanks for being patient with us parents out here.

 

Dawn

 

 

The anti-neural antibodies are tested directly in the enzyme linked immunosorbent assay or ELISA which tests directly for antibodies against neural antigens lysoganglioside, D1/D2 receptors, and tubulin.

We are looking at the correlation of these antibodies with the symptoms.

 

In the Calcium-Calmodulin dependent protein kinase II assay, we are performing the

test as follows:

 

the childs serum antibody is placed onto neuronal cells in culture in the lab. Then we

take the cells and look to see if the CaM kinase is elevated in the cells over the basal level normally

present in the neuronal cells. The test result indicates that the serum (antibody) triggered the

CaM kinase activation above the basal level. Basal level is set at 100%. We send the graph that has

been published to indicate where your child's results are located. Your child's result was high at 184%

which does fall in the PANDAS range on the graph that we sent or you will receive next week.

 

I hope this helps.