If CAMKII is Elevated, Then what?

[MomWithOCDSon]

So . . . if one takes the Cunningham test and finds that CAMKII levels are elevated in their suspected or confirmed PANDAS child, then what?

 

We are considering ordering the test, as we suspect, especially given memory issues, that DS's levels would be high. And we're gratified by the idea that we'd be participating in a study that will hopefully advance the PANDAS profile in the medical community.

 

But what are the ramifications with regard to treatment? Any different than if PANDAS has been identified by other means?

 

I remember seeing warnings and reading a paper posted by someone here (Buster, maybe?) about CamKII and SSRI's -- why they might be contra-indicated in PANDAS cases, so that's the only information I specifically recall. Is there anything additional that high CamKII would warrant, or suggest is prohibitive, in terms of the generally accepted "standard of care" for PANDAS, re., abx, IVIG, pex, supplements and/or all of the above?

 

Thanks!

 

Nancy

[smartyjones]

mom - very wise things to consider when doing testing and especially b/c it is quite a bit of money. i agree the testing issue is puzzling. not really in answer to your question but along the lines of testing. . .

 

last year, when everything started with my son, we were seeking help from many different avenues. one of the dr's we consulted was a naturopath. she was very good and i liked her but we don't see her anymore, mainly b/c we differed in our thinking of what the "root cause" of the trouble was. she was thinking he had food allergy/intolerances (possibly celiac) that was throwing everything off (including his ability to fight the strep appropriately) and i was thinking the infections were the cause throwing everything else off.

 

however, one thing i will always remember was what she told me when we first went about testing. she said early in her career, she tested a lot. now, it would be great to have such results and information for interest/research purposes but if it wasn't going to influence how she was going to treat, she didn't do it.

 

that's the premise i've used in deciding not to do cunningham. i absolutely agree her work is important and helpful to most, but it wasn't going to change how we personally are treating at this time. i do think it's too bad my son is not included in her research numbers and i would have loved to see what his numbers were/are. however, i chose to spend our $ elsewhere. that's not to say we wouldn't do it in the future if we need to if it would influence how we are treating him.

 

there was a post recently where i asked dr. t basically, where does it end - if i thought my son had clear strep issues, do i need to follow up on myco? his answer was that while you can always do more testing, it may not show helpful info and it can be extremely expensive. that said, i believed my son had clear strep issues, which he did, but we've gone to a new dr who saw him test positive for lyme and toxoplasma gondii. he'd had a non-reactive western blot and no one previously tested of toxoplasma.(there's been recent studies implicating it in mental illness).

 

so - i think you're very wise in evaluating what you'd do with those results. keep me posted on what you decide.

[peglem]

When we did the testing, we had hit a road block w/ treatment. The results of the Cunningham test got things moving, not just because of the results, but because it put my daughter's physician in touch w/ people who could help him understand what we are dealing with and how to treat it. We had a very high CamK- but Dr. Latimer did not know what that means in my daughter's case. But, the high antiD2 antibodies is what she said could not be explained away- auto-antibodies that should not be there. So, I wonder why everyone seems to put more stock in the CamK scores than in the antibody levels?

[sf_mom]

I have thought about and discussed this issue A LOT and I've come to the conclusion...... if you go looking for a needle in the hay stack with our children, you end up finding HAY. I now believe its very possible that strep was the original culprit but also very possible that our children's immune system are so FAULTY (auto-immune) they have multiple co-infections that weaken it further. So, is it NOW just strep.... probably not. However, it is our job as parents to attempt to correct the faulty immune system by resolving underlying bacteria, suppressing immune response, limiting exposures, letting the immune system cool off so it can recover, etc.

 

This piece of information has always suck with me.

 

'Characteristically, Streptococcus pyogenes is a Gram-positive facultative anaerobic bacterium. It is not motile, and does not produce spores. It occurs as long chains of cocci, and occasionally in pairs. Streptococcus pyogenes is classified as Group A streptococcus. Group A streptococci typically have a capsule composed of hyaluronic acid and are beta-hemolytic, which is true for Streptococcus pyogenes.[1] Beta-hemolytic streptococci produce a toxin that forms a clear zone of hemolysis on blood agar, demonstrating its ability to destroy red blood cells. This hemolysis is attributed to toxins formed by Group A streptococci called streptolysins. Streptolysins can destroy not only red blood cells, but also the white blood cells responsible for fighting off bacteria and disease, as well as other body cells.[2]'

 

 

As for the Cunningham Test/Results..... I believe them to be very valuable because they measure cross reactive antibodies in the brain that active the Anti-Lysoganglioside, Anti-Tubulin, Anti-Dopamine 1, Anti-Dopamine 2 that in turn activate the CaM Kinase in the blood. We all know that too much or too little dopamine leads to very bad things for an individual (depression, bi-polar, Schizophrenia, etc). With the results, I am able to determine if those imbalances in my child could cause a future potential problem. AND, resolution of those antibodies lesson those potential risks or determine if further treatment is required. We drew our son's CaM Kinase after a steroid burst but prior to IVIG. We plan to retest post IVIG to determine if things have completely normalized for him decreasing his future risk.

 

As for Dr.'s..... Dr. K does not require results. I believe Dr. L likes to have them for confirmation. The results are also helpful in convincing Dr.'s NOT that familiar with PANDAS but if you plan to see a PANDAS specialist it may or may not be necessary.

 

-Wendy

Edited April 10, 2010 by SF Mom

[MomWithOCDSon]

Thanks for the replies.

 

While cost is always a consideration, I'm not so much concerned as to "should we do the test" as to, "if we do, and it confirms high CamKII, what next?"

 

DS is not afraid of needles or blood tests, so it's not an issue in that respect, either. And I get your point, too, SF Mom, as to having the information available for the future, especially since this PANDAS field is only now evolving and, it would appear, evolving faster now that there's some momentum behind it.

 

Does anyone know, additionally, though, if there're supplements or treatments that would specifically help regulate the CamKII? Or if there are treatments or supplements that might aggravate or increase it?

[peglem]

Thanks for the replies.

 

While cost is always a consideration, I'm not so much concerned as to "should we do the test" as to, "if we do, and it confirms high CamKII, what next?"

 

DS is not afraid of needles or blood tests, so it's not an issue in that respect, either. And I get your point, too, SF Mom, as to having the information available for the future, especially since this PANDAS field is only now evolving and, it would appear, evolving faster now that there's some momentum behind it.

 

Does anyone know, additionally, though, if there're supplements or treatments that would specifically help regulate the CamKII? Or if there are treatments or supplements that might aggravate or increase it?

 

I just started a post about this paper that suggests taurine can reduce CamKII levels.

http://www.ub.es/farmacia/recerca/articles...elixJunyent.pdf

 

But, in thinking about it further I wonder if that would help in PANDAS- taurine lowers it by regulating calcium channels. But if auto-antibodies are triggering the increased activity- not sure the taurine would compensate for that.

[sf_mom]

I think the 'what next'....... depends on clinical picture. Create a baseline test now for CaM Kinase. If your son fully recovers over the next year on antibiotics then I say retest CaM Kinase to see if its lowered from everything you have done!!! Then maybe make treatment decisions, i.e. lowering antibiotic level, etc.. If the CaM Kinase continues to remain high and symptoms are not resolving on antibiotics then 'I' would consider more aggressive treatments to resolve both symptoms and CaM Kinase before disease progresses.

 

As you know, these are very personal choices with not a lot of documented history. BUT, our family choose to go at this 'bug'/auto-immune illness very aggressively for our son while praying for the best possible outcome. AND, because I have had IVIG myself and it also saved our younger son's life it was not a scary proposition. We are close to seeing 100% resolution for our son with the hope that this will provide long term remission. We have no regrets.

 

-Wendy

 

 

 

 

 

 

Thanks for the replies.

 

While cost is always a consideration, I'm not so much concerned as to "should we do the test" as to, "if we do, and it confirms high CamKII, what next?"

 

DS is not afraid of needles or blood tests, so it's not an issue in that respect, either. And I get your point, too, SF Mom, as to having the information available for the future, especially since this PANDAS field is only now evolving and, it would appear, evolving faster now that there's some momentum behind it.

 

Does anyone know, additionally, though, if there're supplements or treatments that would specifically help regulate the CamKII? Or if there are treatments or supplements that might aggravate or increase it?

Edited April 11, 2010 by SF Mom

[marilina]

When we did the testing, we had hit a road block w/ treatment. The results of the Cunningham test got things moving, not just because of the results, but because it put my daughter's physician in touch w/ people who could help him understand what we are dealing with and how to treat it. We had a very high CamK- but Dr. Latimer did not know what that means in my daughter's case. But, the high antiD2 antibodies is what she said could not be explained away- auto-antibodies that should not be there. So, I wonder why everyone seems to put more stock in the CamK scores than in the antibody levels?

We are in the same situation. plus here in Italy there are NOT specialists in the treatment of PANDAS. Although the titles Cam are really "significant" and I hope they will become diagnostic for this disease, what has driven our NPI to act were the anti-D1 antibody that in my daughter are very high (8000)

136 of the CaM is important, but the presence of anti-D1 (8000)scared me and still is clear for everyone (even for doctors who do not know enough about PANDAS) that they should not be there.

I think we should ask dr.Cunningham all together (not each on its own) to keep us updated on these titers ALSO ... a kind of guide of work in progress ...

I'm searching a lot these days of some explanation of what these antibodies act.

- They act ct as blockers of dopamine?(like drugs?)

- They work by interfering with the signal. but what does it mean?

- The dysregulation of release of dopamine how does interfere?

- It also affects other receptors? (In my case the problem is D1. D2 also work badly as a result?)

in Internet there are only explanations of 2 very different conditions, I would say,opposite: Parkinson's and schizophrenia. In the first case there is not enough dopamine in the second they assume there is too much.

and then there are reports of how cocaine acts just on D1 and D2 receptors.

 

What really happens in the heads of our children, I can not even imagine. in the worst moments her pupils are open wide, just as under the influence of drugs.

I hope my NPI will explain me remarks that he made on phone when I told him that D1 antibodies were high: commented with a "damn": simply because the antibodies should not be there or because for him is really clear what means having an 'interference' like this?

Edited April 11, 2010 by marilina

[marilina]

http://www.antibodies-online.com/antibody/314926/anti-DRD1/

 

DRD1= Dopamine Receptors D1

DRD1, a Dopamine Receptor, mediates the effect of the neurotransmitter dopamine, an intermediate in the biosynthesis of noradrenaline and adrenaline. It is involved in the control of motor activity and cognitive memory. Downregulation of DRD1 leads to severe impairments in working memory and to locomotor hyperactivity, which are observed in diseases such as schizophrenia, Parkinson's disease, affective disorders, and attention deficit hyperactivity disorder. DRD1 enhances smooth muscle contraction and vasodilation in the heart. It also modulates sodium transport in the kidney and is involved in the pathogenesis of hypertension. Alternate Names: anti-DRD1 antibody, D antibody, DADR antibody, DRD1A antibody.

[trggirl]

But to just bring out a point, not all of us have the elevated antibodies, but it seems that most of us do have the CamK II elevated proteins. So it seems it is the CamK that is tying us all together in some form or fashion.

[marilina]

But to just bring out a point, not all of us have the elevated antibodies, but it seems that most of us do have the CamK II elevated proteins. So it seems it is the CamK that is tying us all together in some form or fashion.

yes of course ,Trg girl

most of us have Cam high and this tight us all togheter

some have even antibodies levels elevated.....just searching what does it mean