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Cam Kinase II results/Myco


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Hi friends,

 

Today we recieved dd's (age 12)Cam KII results. It is 168 with 98 being normal. She was not in an exacerbation at the time of the blood draw, but what I guess you would call just a chronic state. Kathy Alverez said it was ok to draw the blood at this time, but just her number would be lower b/c she was not in an exacerbated state.

 

Well, I don't see alot of folks posting their exact results, but that seems pretty high to me and Dr k said in a quick email that it was in the "abnormal territory." She just started azith at 250mg (seems low to me) a few days ago and we are waiting for lyme results through Igenex.

 

Her myco retest after 4 weeks came down slightly, but not much. IgG went from 2.00 to 1.93 with <.90 being normal. IgM went from .94 to .68 with <.90 being normal. Non-believing PANDAS pediatrician says it's an old infection, but I thought these tests were not so conclusive and I saw someone say somewhere here that at least one doc says treat the "old" infection.

 

She still has yellow and green mucous/phlegm which has not stopped since May.

Should she switch to Biaxin? I know its only been four days on the azith, but at this dosage we are seeing no change so far~all PANDAS symptoms alive and kickin'. She is 5'5" and 116 pounds.

 

After the lyme result, if it is negative should we try a tapered steroid burst~even if she still seems to have an infection? Dr k is saying go to IVIG, but is there something else we should try first?

 

So thankful for you all,

 

PANDAS McNuggets w/fry/coke

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hi there. i hope some of the pros will have some good advice for you. we have been on this journey for over 2 years but only figured out the pandas dx recently so i am still learning. just wanted to say good luck hang in there!

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Yup...our dd was also in the 160's (high PANDAS range) when she wasn't in an exacerbation when we first tested her 1.5 years ago.

 

I don't know much about Biaxin.

 

I would say your Azith. dose is too low. Our dd is on 250mg/day Aztih for over 2 years. She started at that dose when she was 43 pounds (2nd grade, anorexia) and is now 64 pounds (5th grade). There was a period last year when we upped her to 500mg/day for about a month. So, I would say your dd should be easily be able to take 500mg/day if she is above 100 pounds.

 

She still has yellow and green mucous/phlegm which has not stopped since May.

 

can you see an ENT or someone? It seems like it would be important to get to the root of the infection. IVIG might help the infection...but if there is an underlying cause that isn't addressed (cyst, tonsils, etc) then I would think the IVIG wouldn't be lasting.

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My son's test came back at 194 - that seemed pretty darn high to me! We haven't gotten anyone to tell us what to do. I am planning a mtg with our dr on Monday. I am sure he will not know what to do with this at all. If you don't mind me asking, what type of penicillan is your child taking and dose/how often? Thank you.

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  • 3 weeks later...

Thanks Nancy. Do you mean he should be taking 500 mg of zithro. every other day? What dose is your child on? Did they do ivig? If so, what were the results? Karen

 

 

My daughter with the worst symptoms was a 140 with 3 out of 4 antineuronal antibodies high. My son was a 189 with one out of 4 high. You need twice as much azith. And you need it for years.

 

Nancy

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