Cunnigham Results

[T_Anna]

Just received our report:

 

D1 D2 Lysoganglioside Tubulin CaM KinaseII

DS's results 1000 4000 80 500 209

Normal range 2000-8000 2000-8000 80-220 250-1000 53-113

 

Because of the elevated CamKinaseII DS is PANS/PANDAS Highly Likely

 

Any thoughts what this means?

 

Talking to the doctor early tomorrow morning.

T.Anna

DS15

[SSS]

Well, I'm no expert, but if this new Cam test is the same one she did out of the University (and pretty darn sure it is)

Cam K of 209

is the highest I've seen/ heard of ---

Ours was 175, and I thought that was extremely high.

I would think a high dose IVIG would be in order to get the inflammation down.

Edited June 18, 2013 by S & S

[norcalmom]

Ditto what S&S said. Even though the anti-neuronals are almost all in range, there are many anti-neuronsl they don't test for specifically, the Cam K II is a measure of any anti-nuronal activity.

 

Anyone know about LOW D1? I think most pandas kids are high in, in one or more of the measures. I wonder why there is even a "low" for the D1 measure - its a measure of antibodies AGAINST a dopamine receptor. I would ask moleculera what a low number in the category could mean. And why they even have a low for it.

 

Our DS was 176 when not in exacerbation, with one high anti - neuronal - anti-lysoganglioside
(it was 5x the mean). IVIG was great for him - and Cam K came down to 130 - we measured it 3 months post IVIG,( and all his anti neuronals were in range).

 

Out of curiosity - what are your child's symptoms? OCD or tic, both ?

[peglem]

Back in 2009 my daughter had CamKII of 242, with elevated D2 of 16,000.

In your case it looks like something is affecting the CamKII activity, but not one of the four antibodies that was tested in this panel.

[LaurenK]

Agreed, it doesn't seem like it would be autoimmune since none of the "main PANDAS autoantibodies" are elevated. To me, with no high antineuronals, I wouldn't pursue IVIG.

[T_Anna]

DS has severe OCD. He has some tics, mostly with his fingers. He used to have body movements, but I haven't seen those lately. Prior to this exacerbation his issues were showers, praying for hours, hoarding, etc. Now it's mostly avoidance.

 

We did two IViGs. In February 2013 and March 2013, but they weren't enough of a reset at the time.

 

T.Anna

DS15

[Mayzoo]

Back in 2009 my daughter had CamKII of 242, with elevated D2 of 16,000.

In your case it looks like something is affecting the CamKII activity, but not one of the four antibodies that was tested in this panel.

 

We have not done this test yet. For a thousand dollars, we have other priorities right now. BUT, would the antibodies be raised in an immune compromised kiddo? I am asking for my kiddo case, and maybe T.Annas. My kiddos strep antibodies are never raised, and are actually very low. Her IgG and IgA are below normal.

 

She qualifies for IVIG, but we have not pursued it yet. We want to get all the other stuff under control and see what kiddo is like then. Then we will decide if we need to pursue it or not.

[Mayzoo]

DS has severe OCD. He has some tics, mostly with his fingers. He used to have body movements, but I haven't seen those lately. Prior to this exacerbation his issues were showers, praying for hours, hoarding, etc. Now it's mostly avoidance.

 

We did two IViGs. In February 2013 and March 2013, but they weren't enough of a reset at the time.

 

T.Anna

DS15

 

 

But he responds quite well to steroid treatment, if I recall correctly? That would be one indicator that his condition is in fact autoimmune.

Edited June 19, 2013 by Mayzoo

[SSS]

I'm sorry, I did not remember/ realize there already had been 2 recent IVIG's.

Can you call the lab and speak to them about this test?

I would think for the price of the test, and your high CAM result, after 2 IVIG's,

I would want to hear some feedback.

[peglem]

 

Back in 2009 my daughter had CamKII of 242, with elevated D2 of 16,000.

In your case it looks like something is affecting the CamKII activity, but not one of the four antibodies that was tested in this panel.

 

We have not done this test yet. For a thousand dollars, we have other priorities right now. BUT, would the antibodies be raised in an immune compromised kiddo? I am asking for my kiddo case, and maybe T.Annas. My kiddos strep antibodies are never raised, and are actually very low. Her IgG and IgA are below normal.

 

She qualifies for IVIG, but we have not pursued it yet. We want to get all the other stuff under control and see what kiddo is like then. Then we will decide if we need to pursue it or not.

My daughter has never had elevated strep titers, has low IgG and low IgA... I'm thinking that my daughter does make antibodies, just doesn't make them correctly. So infection or exposure does activate immune response- but the antibodies end up being against self instead of against pathogen. Just an educated guess.

[T_Anna]

Spoke to Dr.T this morning regarding the results. He said that it showed that there was activation due to antibodies, but not against those neurons. He wants to run another neuron panel that will include other possibilities. In addition, it looks like DS is hypoglycemic and may have trouble with his Thyroid levels, THS levels dropping. He wants to check all those out this week in addition to running genetic tetsing. He mentioned that there is someone running some trials of immune suppresant IVs atthe MayoClinic.

 

In the meantime, I'm trying to get an appointment with Dr. Susan Schulman who I've heard good things about and can run PEX. On July 3rd we have an appointment with Dr.Najjar at NYU, but I just heard that his assistant tends to recommend psych treatments and that we need to insist to see Dr.Najjar in person.

 

So tired of all this running. DS was a complete jerk this morning, wouldn't take meds, said he wouldn't eat and then changed 20 minutes later. He must have gotten a text from his buddy that he was coming to visit...now he's nice again, took his pills, eating cookies and playing video games with his brother and the friend.

 

T.,Anna

DS15

[Christianmom]

My son's Cunningham results in February of 2011 while in exacerbation were:

 

D1--2000, D2--4000, Lysoganglioside--160, Tubulin--500, CaM KinaseII--168

 

My son's ONLY symptom was, and continues to be, OCD. Dr. T tried everything to get my son better. In the end my son was diagnosed with lyme. He didn't get better until we started lyme treatment with an LLMD.

[nicklemama]

Did anyone else notice the parameters for normal have changed? They are not the same as Nov 2010 when my son was tested during the study. That said, his CamK and tubulin would still be considered out of range.