Cam Kinase II numbers

[bronxmom2]

We got our number this morning... 160

 

Blood was drawn at the very beginning of an exacerbation... I was going to wait because I thought he was OK, just started to see telltale signs and realized that Dr. L would ask for these numbers, so I did the draw.

 

Over the next week and a half we got worse and worse, then finally talked dr. into zithromax and he was better in 3 days.

 

I have all the confirmation I need.

 

Also, my husband finally believes. This is huge.

 

All I can say is... Kathy in Dr. C's office is an angel! She sent me these numbers on Saturday of a holiday weekend!

[EAMom]

Hi Bronxmom! Yay, that is great that your husband is now "on board".

 

PS. I'm glad the Zith. helped too!

[monarchcat]

First, yes, Kathy at Dr. Cunningham's office is an absolute SWEETHEART. I am so impressed with all of them there, but having communicated mostly with her, I can say without reserve that she is such a doll!

 

I got my son's Cam number today as well: 193. This puts him at the high end of the PANDAS scale! I was really surprised to see such a high number because he's not "classic" PANDAS and I thought we might actually be using this as a baseline because he didn't appear to be in an exacerbation period. I think with him, though, he's had this for a few years and the symptoms are more generalized and subtle. He has tics and emotional issues, but nothing nearly as severe as some of the kids I read about here and elsewhere. It's all so confusing!

[pixiesmommy]

Got ours this morning as well. Pixie's was 140 while not in an exacerbation. Will they send another kit to have tested while IN an exacerbation? Just curious since I have read some ppl on the board seem to have been able to send in another sample. Hopefully we will be getting IVIG next week and won't need to worry about that, but still....

[Megs_Mom]

Meg's numbers

 

Anti-Lysoganglioside 640 – high

Anti-Tubulin 500 normal

Anti-Dopamine 1 2000 normal (high of range)

Anti-Dopamine 2 4000 normal

 

CamKinase II = 133 Megan's onset is all OCD. So she is in the mid-range, but for an OCD child is high. And she was at the end of a cycle, and had started Zith. So for me, this is finally the confirmation that I am not imagining things, and that some of the decisions we are making about preventative anti-biotics and steroids, are the right decision. I don't know why I needed this test, but I did. I'll share this with my husband tonight. Combined with sudden onset, reaction to Prednisone Burst, and mild piano movements - she is PANDAS. Really odd emotional moment. Most of the time, I am very confident in our decisions, but I hate all the moments of challenge from medical doctors. While this may not be respected by all docs, it is more what it does for us and our confidence in how to help Meg.

 

I sent Kathy a rather emotional note, as she stayed late last night to run the test & get results, so that she could spend her weekend getting them out. Can't really think how to say thank you for caring that much. Susan (Meg's Mom)

[dcmom]

Susan-

 

I am so glad you rec'd the numbers.

 

I am sure I know how you are feeling. I was afraid dd's numbers would come back non pandas (then where would we be), but now that we have a confirmation of what we know, in black and white numbers, I am a little lost, in a sense. I guess I am starting to feel that this is inevitable, that it WILL be back (if we are healing now), and that we need to do something. Sigh..

 

I will be talking PEX with our doctor next week. Sure I will be posting much more after that...

 

Hang in there. You know you are doing AWESOME for Meg. Where would these kids be without parents with the means (money, brains, never give up attitude, and some free time to google)? I know there must be countless kids who have pandas, and it is NOT recognized. My heart breaks at that thought. Our kids really are the lucky one, ya'know. I know you will do what she needs, you will figure it out, we all will.

 

Eileen

[colleenrn]

EaMom,

I cut and pasted the other results so they are all together. Are the CamKinase results considered high? None of them are in a flare up now and all of them are on daily Zith since last October. I am having trouble figuring this out.

 

 

13 yo

CamKinase 143

 

Anti-Lysoganglioside 320

Anti-Tubulin 1,000

Anti-Dopamine 1 2,000

Anti-Dopamine2 8,000

 

8 yo

CamKinase 135

 

Anti-lyso 320

anti-tubulin 500

anti-dopamine1 500

anti-dopamine2 2,000

 

6 yo

CamKinase 119

 

Anti- Lyso 80

Anti-Tubulin 500

Anti-Dopamine 1 1,000

Anti-Dopamine 2 8,000

 

Thanks,

Colleen

[bronxmom2]

Did you get the study? Kathy forwarded a very interested study along with our number. The range of Cam Kinase #s for PANDAS kids was 110-200, with a mean about 145.

 

If you didn't get that study, give me your email and I'll send it to you.

[bronxmom2]

Oh, and one other things, I thought it was interesting that your kids' numbers seem to trend downward by age... maybe suggesting that whatever you've done to protect your kids as this thing has unfolded in your lives ...has worked to protect your younger kids?

 

Do you feel these numbers reflect what you see in real life, in any meaningful way?

[Buster]

Hi folks,

 

Just to remind everyone, we don't yet know what real normals are on the tests yet -- or what symptoms are tied to which antibodies (if at all).

 

PANDAS is thought to have a pathogenesis similar to Sydenham Chorea and to be caused by the combination of three events:

• the creation of an antibody to GABHS that cross-reacts with neuronal tissue
  
• a genetic pre-disposition that does not suppress the antibody
  
• a break-down in the blood brain barrier that allows the antibody to reach neuronal tissue
  

Just because we have the antibody in the blood that could cross react with neuronal tissues doesn't mean it will. Essentially you need all 3 elements to get an exacerbation.

 

It is my belief that the break-down of the blood brain barrier is the dominant reason we see exacerbations (i.e., it is the last straw). So what we see with Prednisone and likely with IVIG (and maybe even with azithromycin) is closing of the blood brain barrier by reducing inflammation of the endothelial cells.

 

We've drawn titers 3 times:

• once when we were in a calm quiescent state
  
• once during an exacerbation (pre-prednisone)
  
• once post-prednisone
  

CaM Kinase II was 185% in the calm, 253% in the exacerbation and 170% post-predinsone. So it does look like CaM Kinase II is correlated with exacerbation as per Kirvan. We also noticed that anti-Tubulin was elevated in the exacerbation. Prednisone did seem to lower anti-D1, anti-D2 and anti-Tubulin, but strangely didn't have an effect on anti-Lysoganglioside.

 

We're not sure yet why the anti-Lysoganglioside didn't drop...

 

Here's our numbers:

1. quiescent:
   • anti-Lyso: 1280
     
   • anti-Tubulin: 1000
     
   • anti-D1: 8000
     
   • anti-D2: 16000
     
   • CaM Kinase II: 183%
     

[*] exacerbation (pre-pred):

• anti-Lyso: 640
  
• anti-Tubulin: 4000
  
• anti-D1: 8000
  
• anti-D2: 16000
  
• CaM Kinase II: 253%
  

[*] 3 weeks post-pred (quiescent)

• anti-Lyso: 1280
  
• anti-Tublin:2000
  
• anti-D1: 4000
  
• anti-D2: 8000
  
• CaM Kinase II: 170%
  

Regards,

 

Buster

[peglem]

Buster, I find it interesting that your child's anti-lyso was lower during exacerbation than at the other times. Ideas on that? One other thing-we're testing circulating blood here, so I'm wondering if someone with an active strep infection could have test results indicative of PANDAS but not have PANDAS symptoms due to closed BBB?

[Diana]

Beth Latimer DOES NOT use Steriods as a cure. It is just to get the inflammaiton down. It is an act of compassion really. Generally, the kids ramp up again but it gives the parents and the doctors time to watch and observe before deciding PEX or IVIG.

[Diana]

Colleen, This is your old friend here! Are these all your kids?

 

OK - so Madeleine has told me this is a "Screening test for pandas" - CamKinase anything over 100% -- so 134% etc etc --- there is an activation of some sort occuring surrounding strep reaction (this is Madeliene's current hypothesis).

 

Look everyone --- this is not a PERFECT test --- she is understanding things thru all of us. Where there is activation of CamkInase and ANY of the anti-neuronal antibodies -- dopamine, lysoglangliside, tubulin -- anything about the "normal mean" --- there is some sort of activation occurring.

 

My son post-ivig still has a CamKinase of 165% but he has NO SYMPTOMS (except today one mild neck tic for 40 seconds), high dopamine 8000. So what does that mean? We're not sure yet. The CLINICAL picture Madeleine just emailed me, is the KEY. Each person's body is different.

 

Some of the kids that have A LOT OF OCD but have struggled with pandas for 2 years - have CamKinase of 135% above normal. So - does that mean their body has adapted? Does my son's high level of 165% mean he is fighting it?? Madeleine is not sure yet.

 

But the bottom line is when this element is present and the antineuronal antibodies are activated--- there is a clear autoimmune activiation that we as parents have to figure out what we are going to do about it. Antibiotics, ivig, plasma ex..... For my son....there was clearly no choice because he was completely and utterly insane. Maybe other kids....it will fade in time.

[Diana]

I have talked to Beth Latimer, Swedo and 2 brain surgeons and the answer is this: if the child is young (not in puberty)...they will LIKELY repair if given treatment within a reasonable period of time. With basal ganglia NO ONE has studied the length of repair time but where there is no white or grey matter inflammation about one year should do it.

 

My son at age 7, did have brain inflammation AROUND the basal ganglia (Virchow Robin Spaces) -- and it absolutely took one year to heal. I see bright eyes now and zero math, writing issues. But it was one HECK of a long year. Actually I'd say it took 10 months for him to heal.

 

No one understands the basal ganglia clearly the brain docs have told me. No one. One doc last week told me: "The basal ganglia are sort of like a rubber band ball. As it heals one nerve touches the other. And we don't know what will happen. We cannot see it. We cannot cut the nerve ball open and see. It is the nucleous of the brain. The control center."

 

But there are so MANY happy cases of PANDAS kids reparing well and becoming normal adults ----- I think the odds are great and the docs seem to think so too. FYI - there are over 100 cases of pandas now thru this forum and the pandasnetwork.org website. Sooooooooo - it is probably time to try to start tracking each other more logically. I'm trying to work on that with some other pandas moms. By next year, we should have better answers.

[Buster]

Hi Peglam,

 

We have a couple of theories. According to Kirvan's 2003 paper, it appears that three of the antibodies interfere with lyso-gangliosides, but only one of them causes CaM Kinase II activation. So it could be that there was a shift in concentration of the anti-lyso-gangliosides, it is also very possible that 640 is really very close to 1280 (i.e., I chose only one time constant to report). It's possible that there's something else in the blood serum (such as another unidentified antibody) that causes CaM Kinase II activation. It's hard to say.

 

With respect to your second question, I don't think it needs to be an active strep infection, just that the antibodies are in the blood. I've been thinking that the anti-lysogangliosides probably drop at the same rate as other antibodies (i.e., around 4-6 weeks). So after the antigen is removed, the symptoms should abate over that time. I'm sure in some people the rate drops faster, in others slower.

 

We'll just have to see what the research discovers... We're unfortunately at the fore-front of the disease and have to wait for research to explain in the lab what we observe in the field :-)

 

Regards,

 

Buster

 

Buster, I find it interesting that your child's anti-lyso was lower during exacerbation than at the other times. Ideas on that? One other thing-we're testing circulating blood here, so I'm wondering if someone with an active strep infection could have test results indicative of PANDAS but not have PANDAS symptoms due to closed BBB?