camKinase testing

[Tattoomom]

So, I emailed Dr. Cunningham about the testing and here was her reply...

 

 

 

Dear Parent

We are happy to include your child in the PANDAS study. We measure the levels of antibodies against the neural antigens lysoganglioside, tubulin and dopamine receptors D1 and D2. Antibodies against these neural antigens may be elevated in the blood of children suspected of PANDAS, Tourette’s Syndrome or Sydenham chorea. We also test for activation of CaM Kinase in neuronal cells in culture. Antibodies may induce increased signaling of neuronal cells and cause release of too much dopamine in the brain. These tests suggest that your child might have one of these diseases but the tests are not FDA approved.

 

 

The part I'm not really understanding is "Antibodies against these neural antigens may be elevated in the blood of children suspected of PANDAS, Tourette’s Syndrome or Sydenham chorea."

 

I don't know, I guess I'm just trying to find a major reason to spend $400 on the test if all it's going to do is tell me that if his levels are high, my child might have PANDAS or TS?

 

Aren't his symptoms enough proof?

[peglem]

So, I emailed Dr. Cunningham about the testing and here was her reply...

 

 

 

Dear Parent

We are happy to include your child in the PANDAS study. We measure the levels of antibodies against the neural antigens lysoganglioside, tubulin and dopamine receptors D1 and D2. Antibodies against these neural antigens may be elevated in the blood of children suspected of PANDAS, Tourette’s Syndrome or Sydenham chorea. We also test for activation of CaM Kinase in neuronal cells in culture. Antibodies may induce increased signaling of neuronal cells and cause release of too much dopamine in the brain. These tests suggest that your child might have one of these diseases but the tests are not FDA approved.

 

 

The part I'm not really understanding is "Antibodies against these neural antigens may be elevated in the blood of children suspected of PANDAS, Tourette’s Syndrome or Sydenham chorea."

 

I don't know, I guess I'm just trying to find a major reason to spend $400 on the test if all it's going to do is tell me that if his levels are high, my child might have PANDAS or TS?

 

Aren't his symptoms enough proof?

You'd think the symptoms would be enough proof. But, until I had this testing done...it was all theory. This test is still in the study stages, so not necessarily "proof" either. Yet, showing the pediatrician (who was already a believer in PANDAS and that my child was afflicted with it) the results gave him something to hang his hat on. The fact that he had something that showed my daughter really had anti-neuronal antibodies, reading the research about the development of the test, and talking to Dr. Cunningham about it, gave him the impetus to take action. All he knew before that was to try to avoid strep-prophylactic abx, remove tonsils...but that wasn't getting us very far. It also finally made a believer out of my husband...

[Tattoomom]

I was excited until I read that it includes Tourette Syndrome. I was under the impression that this test was specifically for PANDAS but since it's not, I'm not sure how much faith my Pediatrician will put in it.

 

I guess now what I need to know is, are there kids who have all the symptoms but who do not have these antibodies?

 

I mean, is it worth checking to see if my son is in some sort of range?

[peglem]

My understanding is that the tourettes she is talking about would be tics as a symptom of PANDAS. I may be wrong about that, and don't know why she called it tourettes syndrome, particularly since she didn't list OCD as well.

[EAMom]

Look at figure 3b of this paper http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf

 

The Cunningham test (CaM kinase ll) can be helpful in differentiating PANDAS from non-pandas tics. If your child's CaM kinase ll is elevated (falls in the PANDAS range) that would be more suggestive of a PANDAS diagnosis vs. if it were lower (in the "tics" range). Of course there is a "grey zone" area (the Low PANDAS range...I'd say 100-115 roughly) where it'd be hard to say one way or another (esp. if symptoms/history were unclear) if a child was PANDAS or non-pandas tics.

 

For us, the Cunningham tests were very helpful in convincing our local immunologist to okay IVIG. (Our child scored in the high PANDAS range.) Without those test results we would have ended up traveling (from CA) to Dr. K. in Chicago for treatment. (It may have helped matters that our immunologist knew who Dr. Cunningham was and respected her work.)

[ajcire]

For me it was something concrete to show my husband. My ped is not a non believer, he just says he doesn't treat it, doesn't feel it is within his realm to treat it, feels he is not qualified being he doesn't know enough about it but he was still very much interested in the results and was very open to do blood draw for me to submit to Dr. Cunningham. It was not $400.00 at the time though and I can totally see the dilemna you have as to whether it is justifiable or not.

[mama2alex]

I was excited until I read that it includes Tourette Syndrome. I was under the impression that this test was specifically for PANDAS but since it's not, I'm not sure how much faith my Pediatrician will put in it.

 

The letter we received with our test results (not prior to testing) only mentioned "Sydenham chorea, PANDAS or related disorders." There was absolutely no mention of Tourettes in the letter. I can see how the wording in your letter would be problematic if your child has tics. You might want to email Dr. Cunningham and ask why she included Tourettes in the list, and explain how this would make the results less useful for you and your doctor. You might also ask her if the letter you'll recieve with your test results will also mention Tourettes, as ours did not. She is very responsive to emails, in my experience.

[sww817]

For us, the test did not give me the answers I had hoped for. My son was NOT in an exacerbation at the time and he had a cam somewhere in the 90s. That would put him in the non-PANDAS range BUT he has classic PANDAS presentation. I was actually shocked he was that low, although two of his antineurals were high. Selfishly, I wish I had not had it done since it confuses me but as far as research is concerned, he could be another piece of the puzzle. We work with Dr. Latimer so I was not depending on this result to get the help we needed. And she did not change her protocol after we got the number. It is a hard call now that the cost has increased. I do still believe it can be helpful but we just have to remember that this is still in research phase and they do not have ALL of the answers yet.