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Anthonys cam levels


dee45
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Hi,

Kathy just sent me can-kinase II levels on ANthony they are 142 which looks like they are in the mid range. So now what do I do?? I am so confused.

 

Deanna

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Deanna,

Hi, I am so confused as well!! I just got back my sons Cam-Kinase II levels and it was 137. I just ran the test too see if my son has Pandas because I have always had that in the back of my mind. Now I have the proof!! This is so hard to wrap my mind around. I just keep thinking all this time my son has not been getting the treatment that he has needed!!! :angry: I feel sick to my stomche right now!! Can anyone tell me what my next step should be?? I am very confused Char... :blink:

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If it were me, I'd do the following

 

Get a Dr. to prescribe long term Antibiotics if you haven't already

 

See an immunologist and have following tests done:

 

* STREP PNEUMOCOCCAL ANTIBODY TITER

 

* IgG – subclass 1, 2, 3, 4

 

* IgE

 

* IgA

 

* IgM

 

* Mycoplasma Pneumanae and Ebstein's Barr Virus. These 2 don't leave a child's system and might help you keep his doctors and yourself informed about keeping him healthy in the future. Many of the kids are testing as having these 2 viruses......so....it is good to know.

 

With a deficiencies in the above your insurance should pay for IVIG. BUT, its also important to know underlying immune issues.

 

Pursue IVIG or PEX to rid body of ENTIRE infection. Repeat IVIG if symptoms continue.

 

Follow-up CaM Kinase II testing 6 months and 1 year post IVIG/PEX

 

Follow-up Titer Testing as they hit puberty to determine ability to fight off strep.

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SF Mom,

Thanks for the responding! My mind is running in circles right now! My son has had systoms for awhile now. I just keep thinking only if I knew before now :angry: I am going to take my son to get long term antibiotics right away. I hope my sons doctor will prescribe them! What is IVIG treatment for Pandas? Does Dr.L take patients from Canada? I just feel really overwhelmed right now!!

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Dr. K lists the dosage amounts for IVIG on Web Pediatrics....

 

I know Dr. Kovacevic takes patients from around the world. Its about $8,000 to $10,000 US Dollars for IVIG through him with no insurance. That includes Dr.'s fees, surgery center fees, IVIG, hotel, flight and rental car.

 

I am not sure about Dr. L.

 

-Wendy

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Hi there.

 

I live in Winnipeg and I noticed you say that you are from Canada but that you did Cunningham's blood tests. Did you have any issues sending blood across the Canada / Us border?? I am just wondering about the logistics of it all..........

 

Thanks

 

SF Mom,

Thanks for the responding! My mind is running in circles right now! My son has had systoms for awhile now. I just keep thinking only if I knew before now :wacko: I am going to take my son to get long term antibiotics right away. I hope my sons doctor will prescribe them! What is IVIG treatment for Pandas? Does Dr.L take patients from Canada? I just feel really overwhelmed right now!!

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PKM,

Hi, I got the Cunninghams test sent to me through Fedex. When I got the test, I thought I could go to my family doctor and get my sons blood drawn. But apparently in Canada doctors can't do that. They have to get permission to get blood drawn for research studies. And that can take along time to get permission, to do that. So I thought maybe I could go to a different lab and pay to get it done but no luck :wacko: I started to get very discouraged!! Then I remembered that I had seen a ND doctor for my son awhile ago and she had drawn my sons blood for another test. So, I decided to ask her if she would draw my sons blood for the study. She agreed, I was so happy! I got my sons blood drawn and spun. I sent it back through Fedex and did not have a problem sending it across threw customs, to the USA. Have you found any doctors in Canada who treat Pandas yet and believe it really exits? Char...

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Char,

 

Thanks for the info. re how you got the blood to Cunningham - it might prove to be helpful down the road.

 

As for Canadian docs who treat/believe in PANDAS - not too much success yet. I emailed many of the docs in the states (Dr. K , Leckman, Latimer, Cunningham etc.) asking if they knew of any Canadian docs who treat PANDAS but they knew of no one. The pediatrician he sees does actually believe PANDAS exists but he wants to leave things up to neurology. We have our first neuro appt. on Weds. I am not sure what to expect but I'm not holding my breath. I am wondering if she will just diagnose him with Tourette's that is triggered by illness (as others have experienced). What has been your experience on this side of the border??

 

 

PKM,

Hi, I got the Cunninghams test sent to me through Fedex. When I got the test, I thought I could go to my family doctor and get my sons blood drawn. But apparently in Canada doctors can't do that. They have to get permission to get blood drawn for research studies. And that can take along time to get permission, to do that. So I thought maybe I could go to a different lab and pay to get it done but no luck :wub: I started to get very discouraged!! Then I remembered that I had seen a ND doctor for my son awhile ago and she had drawn my sons blood for another test. So, I decided to ask her if she would draw my sons blood for the study. She agreed, I was so happy! I got my sons blood drawn and spun. I sent it back through Fedex and did not have a problem sending it across threw customs, to the USA. Have you found any doctors in Canada who treat Pandas yet and believe it really exits? Char...

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