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Camk, Taurine, Abx?


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I hope someone has thoughts, knowledge or guidance on this…

Ds’ blood draw was November 8, 2009 for the camk and it came in at 105

Can someone tell me what the bottom read was on a ‘diagnosed” pandas case….was it 103???

 

I am going to roughly guess that that was 1-2 weeks(maybe) that I stopped giving him

Amino acids prescribed by brain balance per their instructions based on his urine and blood samples….In the aminos they added taurine.

On the blood and urine samples they took from him 6/24/09 his taurine was already marked high/out of range..yet they gave him more taurine????

He took the vtiminas and aminos for 3 months or more starting roughly 7/27/09. that would put us at least to 10/27/09. I mentioned to the administrator that perhaps the aminos stimulated him a bit…

 

Anyway….why would ds taurine be so high naturally to start with….

Could it be his body was trying to fight (what ever triggers)the camk naturally on its own?

If he is producing such a high amount of taurine on his own does that effect the camk?

 

I wouldn’t think the taurine would be out of his system by 1 week after taking it for 3 months….

 

I went to see Scott Smith last week in fl…Very Nice guy. And it was good to talk to someone who didn’t think I am crazy. I was also nice to talk to someone who could fill the gaps of what I understand and what I don’t understand and guide me further…

 

So, last Monday we drew for another camk test….

I have concerns again, in getting a bad reading.

Ds was on biaxin from 2/25-4/5 during that time, in conjunction, he also had amox xr 875 x2 for 10 days and a 5 day zpack. Ds new blood draw was 4/19/10 for the cunninham. So it was only 2 weeks between stopping abx and blood draw. I can’t say he was in exaxperation as he could barely stay awake because of his allergies. Also, he may not be as bad as before we started with the abx in feb……

I could also not know what I’m talking about as I am so confused…..and not sure of what I am or am not seeing anymore!!!!!

 

Will the abx effect the cam results?

Is the cam the deciding factor for pandas?!

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from here: http://www.vitaminsdiary.com/amino-acids/taurine.htm

 

Heart disorders, physical or emotional stress, metabolic disorders, high alcohol consumption, and zinc deficiency are factors that can result in high levels of taurine being excreted in the urine.

 

I'm guessing that they supplemented w/ taurine because they thought he was dumping large amounts, causing low body levels?

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fixit-

 

I will answer what I think you are asking, with our experience.

 

PANDAS is still a clinical diagnosis. Meaning, there is NO definative test, the doctor needs to take into consideration all testing, and physical exam, and symptoms and their pattern.

 

I have two daughters. Both have pandas. I have done their CAM Kinase one time, at the same time.

 

They both had strep throat in 3/09 which caused pandas. Julia had overnight debilitating onset. Caroline, had overnight, but not completely debilitating onset (it took us longer to figure her out). I took their Cam Kinase in 8/09. At that point, Caroline's symptoms had been somewhat settling down, Julia's symptoms were mid level, due to a further exacerbation after T&A in June.

 

Julia's cam kinase was around 160- definate pandas. Carolines was 106- "normal". (however all of Caroline's anti neurals were fairly elevated).

 

This "normal" cam kinase threw us off the track for a couple months. Then, unfortunately, she got the flu (probable H1N1) and things went off a cliff (ocd). She responded beautifully to steroids, however that "remission" didn't last, she ended up having pex- and is doing really well now (fingers crossed).

 

SO- in my mind, CAM Kinase is not a definative result, especially if taken when not in the midst of exacerbation. It is one piece to the puzzle. Look at the anti neural numbers too. Also- and this is my best advice- the evidence for pandas can be seen also in the success with treatment. Do what works, and don't worry about the tests- that is what we did...

 

I can't stress how important I think it is to see a pandas doc, if it is AT ALL possible: in my mind that is probably Dr L or Dr K.

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I absolutely agree with everything DCMom has said!!!!!

 

fixit-

 

I will answer what I think you are asking, with our experience.

 

PANDAS is still a clinical diagnosis. Meaning, there is NO definative test, the doctor needs to take into consideration all testing, and physical exam, and symptoms and their pattern.

 

I have two daughters. Both have pandas. I have done their CAM Kinase one time, at the same time.

 

They both had strep throat in 3/09 which caused pandas. Julia had overnight debilitating onset. Caroline, had overnight, but not completely debilitating onset (it took us longer to figure her out). I took their Cam Kinase in 8/09. At that point, Caroline's symptoms had been somewhat settling down, Julia's symptoms were mid level, due to a further exacerbation after T&A in June.

 

Julia's cam kinase was around 160- definate pandas. Carolines was 106- "normal". (however all of Caroline's anti neurals were fairly elevated).

 

This "normal" cam kinase threw us off the track for a couple months. Then, unfortunately, she got the flu (probable H1N1) and things went off a cliff (ocd). She responded beautifully to steroids, however that "remission" didn't last, she ended up having pex- and is doing really well now (fingers crossed).

 

SO- in my mind, CAM Kinase is not a definative result, especially if taken when not in the midst of exacerbation. It is one piece to the puzzle. Look at the anti neural numbers too. Also- and this is my best advice- the evidence for pandas can be seen also in the success with treatment. Do what works, and don't worry about the tests- that is what we did...

 

I can't stress how important I think it is to see a pandas doc, if it is AT ALL possible: in my mind that is probably Dr L or Dr K.

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I was looking for all the above....

Peg...thanks for that link...brain balnce people treat alot of autistc and adhd kids

dc and sf..thanks...i agree too...but as some may know...you start doubting yourself

wornout...i did not know about steroids...he did do a burst about a month prior....

 

not that it matters then, but what would bring the cam down if not abx( i mean besides ivig, or taurine or do they)

if people are seeing results with abx...i would think it would some how interfer,scramble,delete, what ever the cam results...

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I was looking for all the above....

Peg...thanks for that link...brain balnce people treat alot of autistc and adhd kids

dc and sf..thanks...i agree too...but as some may know...you start doubting yourself

wornout...i did not know about steroids...he did do a burst about a month prior....

 

not that it matters then, but what would bring the cam down if not abx( i mean besides ivig, or taurine or do they)

if people are seeing results with abx...i would think it would some how interfer,scramble,delete, what ever the cam results...

I posted a study, not sure what thread, that taurine does indeed, lower CamKII levels...let me see if I can find it. If abx lowers CamK levels, then I'd hate to think what my daughter's levels would be if she hadn't been on abx when she was tested...hers was 242%, while on proph dose zith and I didn't think she was in exacerbation at the time, but we didn't have a baseline at that time.

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Fixit, which test determined taurine was high, urine or blood? The reason I ask is that my 5 yo's taurine tested very high, too, and I believe our DAN at the time (not scott's office) said that his body is dumping taurine in massive amounts through his urine, and that's why his urine test was high. He also said that with Taurine also goes Magnesium so he said I need to really load him up on Magnesium (which BTW is supposed to help tics, I believe). I hope I am remembering the correct amino acid here, I am pretty sure I am..Someone correct me if I am wrong!

 

About the CamK I am not sure, but in my mind if he was in-range at one point then he still has pandas/potential for pandas. And if his symptoms are not fully gone, then he still has a problem. I don't think Scott will kick you out of his office if his CamK comes back low :-). I don't know what he will do, but I do know that he will look at the whole clinical picture. Also, he will look at gut issues, etc. which may be contributing to the problem.

 

Stephanie

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we just requested our test. I asked the same questions - reply was "Usually during an exacerbation the scores a tad hier, but as long as there has not been any steroidal treatments, we should be ok....." they know we are on prophylactic antibiotics too.

 

Maybe the Azithroycin has anti-inflamatory properties, so that may be helping close the BBB giving our kids some releif and as well clearing the strep, but the blood still has what they are measuring?

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