Can someone help me interpret these lab results from Dr. Cunningham?

[acdrobert]

^{Hello Everyone -}

 

^{I have tried re-reading some old topics and posts but I still don't really understand what this means. My ds8 lab results are back from Dr. Cunningham. He had just come through a bad bout of tics although he was not ticcing at the moment the labs were drawn. He scored fairly low. Does this mean that he may have tourettes instead of PANDAS ? I know these results cannot be diagnositc, but should we be leaning in this direction ? Of course that doesn't make since from the clinical picture we see. Neuro drugs worked a little bit for a few weeks but then stopped working. Prednisone stops the tics completely until the day or two after the last dose. IVIG cured our ADD like symptoms, separation anxiety and improved his handwriting. Tics have grandually improved. Now we seem to get relief from the tics with a daily dose of Children's Advil. Tics do come back iafter about 8 hours. any ideas ?}

 

Anti-neuronal Antibody Titers

 

Anti-Lysoganglioside 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 80 160 320 640 1280

positive control 320 640 1280 1280 >1280

negative control 20 40 40 80 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 250 250 500 500 1000

positive control 2000 4000 8000 16000 16000

negative control <250 <250 250 250 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 250 500 500 1000 2000

positive control 2000 4000 8000 8000 16000

negative control 250 500 1000 1000 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 500 1000 2000 2000 4000

positive control 4000 8000 16000 16000 32000

negative control 250 500 1000 2000 2000

normal range 2000-16000

normal mean 6000

[bronxmom2]

Hi, see the post below, we are all trying to figure them out.

[lss]

The numbers you should be looking at are:

Lysoganglioside:640

Tubulin:500

Dopamine 1: 1000

Dopamine 2: 2000

 

In other words, the 2 hour figures is what you need to read. Did they give you the level of CamKinase?

 

Linda

 

 

^{Hello Everyone -}

 

^{I have tried re-reading some old topics and posts but I still don't really understand what this means. My ds8 lab results are back from Dr. Cunningham. He had just come through a bad bout of tics although he was not ticcing at the moment the labs were drawn. He scored fairly low. Does this mean that he may have tourettes instead of PANDAS ? I know these results cannot be diagnositc, but should we be leaning in this direction ? Of course that doesn't make since from the clinical picture we see. Neuro drugs worked a little bit for a few weeks but then stopped working. Prednisone stops the tics completely until the day or two after the last dose. IVIG cured our ADD like symptoms, separation anxiety and improved his handwriting. Tics have grandually improved. Now we seem to get relief from the tics with a daily dose of Children's Advil. Tics do come back iafter about 8 hours. any ideas ?}

 

Anti-neuronal Antibody Titers

 

Anti-Lysoganglioside 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 80 160 320 640 1280

positive control 320 640 1280 1280 >1280

negative control 20 40 40 80 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 250 250 500 500 1000

positive control 2000 4000 8000 16000 16000

negative control <250 <250 250 250 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 250 500 500 1000 2000

positive control 2000 4000 8000 8000 16000

negative control 250 500 1000 1000 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 500 1000 2000 2000 4000

positive control 4000 8000 16000 16000 32000

negative control 250 500 1000 2000 2000

normal range 2000-16000

normal mean 6000

[sf_mom]

Please read my comments in the other thread. It seems like the steroids use might be effecting your results..... I would focus CaM Kinase % only. It is also my understanding its fairly difficult to get rid of tics entirely with IVIG. My son's immune system is very taxed and we may need to consider more than one round of IVIG.

[acdrobert]

Thanks Linda ! I wasn't sure about that. No word o nthe CamKinase yet

 

 

 

 

The numbers you should be looking at are:

Lysoganglioside:640

Tubulin:500

Dopamine 1: 1000

Dopamine 2: 2000

 

In other words, the 2 hour figures is what you need to read. Did they give you the level of CamKinase?

 

Linda

 

 

^{Hello Everyone -}

 

^{I have tried re-reading some old topics and posts but I still don't really understand what this means. My ds8 lab results are back from Dr. Cunningham. He had just come through a bad bout of tics although he was not ticcing at the moment the labs were drawn. He scored fairly low. Does this mean that he may have tourettes instead of PANDAS ? I know these results cannot be diagnositc, but should we be leaning in this direction ? Of course that doesn't make since from the clinical picture we see. Neuro drugs worked a little bit for a few weeks but then stopped working. Prednisone stops the tics completely until the day or two after the last dose. IVIG cured our ADD like symptoms, separation anxiety and improved his handwriting. Tics have grandually improved. Now we seem to get relief from the tics with a daily dose of Children's Advil. Tics do come back iafter about 8 hours. any ideas ?}

 

Anti-neuronal Antibody Titers

 

Anti-Lysoganglioside 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 80 160 320 640 1280

positive control 320 640 1280 1280 >1280

negative control 20 40 40 80 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 250 250 500 500 1000

positive control 2000 4000 8000 16000 16000

negative control <250 <250 250 250 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 250 500 500 1000 2000

positive control 2000 4000 8000 8000 16000

negative control 250 500 1000 1000 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 30 minutes 60 minutes 90 minutes 2 hours 3 hours

patient 500 1000 2000 2000 4000

positive control 4000 8000 16000 16000 32000

negative control 250 500 1000 2000 2000

normal range 2000-16000

normal mean 6000

[Iowamom]

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.

[EAMom]

Hi acdrobert,

 

I have tried re-reading some old topics and posts but I still don't really understand what this means. My ds8 lab results are back from Dr. Cunningham. He had just come through a bad bout of tics although he was not ticcing at the moment the labs were drawn. He scored fairly low. Does this mean that he may have tourettes instead of PANDAS ? I know these results cannot be diagnositc, but should we be leaning in this direction ? Of course that doesn't make since from the clinical picture we see. Neuro drugs worked a little bit for a few weeks but then stopped working. Prednisone stops the tics completely until the day or two after the last dose. IVIG cured our ADD like symptoms, separation anxiety and improved his handwriting. Tics have grandually improved. Now we seem to get relief from the tics with a daily dose of Children's Advil. Tics do come back iafter about 8 hours. any ideas ?

 

You son likely scored low b/c he has already been treated with IVIG (and he was not in an exacerbation). (Pred can also lower the values somewhat.) If you read Dr. Cunningham's JNI paper http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf convalescent (post IVIG or post PEX, not in an exacerbation) PANDAS patients have serum that is comparable normal kids. The fact that your son responded to IVIG also confirms that he is PANDAS since tourettes child shouldn't improve with IVIG (or advil or pred for that matter).

 

SFMom is also correct in the tics seems to be the symptom that is most resistant to treatment (IVIG).

 

Your anti-lysoganglioside was somewhat elevated. I wonder if an elevation in that value occurs with the pandas kids with tics. It will be interesting when Dr. Cunningham figures out what elevations correlate with what values.

 

How long ago did your son have IVIG? would you say the tics are getting better with time (since IVIG) or worse or hard to tell?

[EAMom]

Hi Dawn,

welcome and thanks for posting! I look forward to hearing your child's story. Did you already have IVIG with Dr. K? Hopefully things are going well.

[Iowamom]

Hi Dawn,

welcome and thanks for posting! I look forward to hearing your child's story. Did you already have IVIG with Dr. K? Hopefully things are going well.

 

 

We are in the process of arranging for the IVIG. It seems each time we have gotten ready to contact Dr. K he has been flying around the globe! We put a call in today to make sure he received some earlier fax info and my husband got the answering service. bummer. We are trying. Evan's case is not an overnight onset story. When we look back we see the waxing and waning, but even that was difficult to spot because, as the psychiatrist agreed, he probably hasn't gotten over the saw-tooth pattern before he was hit with another exacerbation. Like multiple saw-tooth pattern stacked on top of one another. Pretty soon it doesn't look like much of a pattern. Dr. K said these difficult cases are hard to predict the IVIG outcome, but we feel we must try. Has anyone else that have had high mycoplasma pneumoniae IgG titers respond well to IVIG? Dr. K says his observation has been that kids with these titers elevated have the Katy-bar-the Door rages. Evan's was very elevated and I can not recall the last time he had an URI that presented like this little bug. He said it has only been his observation. Googling m. pneumoniae and you will see the research linking it to autoimmune reactions in the brain, brain inflammation, etc. Evan's strep titers and behavior continued to skyrocket (1500/2700!)even on the penicillin injections. I couldn't get the disease specialist to budge off the pencillin."It will work!" Excuse me, come live with us and you will see it is not working, doc! Heck, look at the lab numbers!! I finally begged Zithromax from our GP this last May, and we got the strep arrested. We are taking 250mg a day now. We saw some very positive improvement on the Zith for a while. The choreiform mvt that he had in his fingers is gone. The perseverative (stuck) thinking and anxiety isn't quite as bad, the rages, destructive/aggressive behavior is being helped only a little by Risperdal (1mg/2x day). Separation anxiety has been an issue with the start of school, but I pray we are on the right road now. Every other psych drug we tried failed. Risperdal has only taken the edge off, and I hate it because of the weight he has gained. But weight gain or spade to the house; hammer thrown tomahawk to my head/more house damage. The tics he had were noticeable, but not bothersome to others. Those subsided several months ago, but with what I saw him doing tonight repeatedly...ugh. I have seen the real tenderhearted son enough to know: this ain't the real Evan. We are praying that our son will recover.

 

OK, I've rambled. BTW, our son is 10 1/2. It's been a journey.

 

Dawn