Should we and How do we get a CaM Kinase?

[lboll]

Hello, we are heading back to the states in June and I would like to get the CaM Kinase test for our son, age 10. From what I've been reading we should do this during an excerbation of symptoms. However, we only have a short window of time (2 months) when we'll be there. So I have two questions:

1. Would it be worth getting this test done if he's not showing symptoms?

2. If it's okay to get one without symptoms, how do we go about having this done? Are regular pediatricians able to order this test? Or, is this only done through Dr. Cunningham?

 

Thanks for answering.

[EAMom]

Hello, we are heading back to the states in June and I would like to get the CaM Kinase test for our son, age 10. From what I've been reading we should do this during an excerbation of symptoms. However, we only have a short window of time (2 months) when we'll be there. So I have two questions:

1. Would it be worth getting this test done if he's not showing symptoms?

2. If it's okay to get one without symptoms, how do we go about having this done? Are regular pediatricians able to order this test? Or, is this only done through Dr. Cunningham?

 

Thanks for answering.

 

 

 

 

Here's an old thread on the test http://www.latitudes.org/forums/index.php?...gham+blood+test with lots of info.

 

1. If your son is NOT showing symptoms, the test is less likely to show up positive (or the numbers would be lower than when he was symptomatic), so it's best to wait until an exacerbation. It's also best to draw blood b-4 you do any steroids, since steroids will lower the results.

 

2. You have to request the kit from Dr. Cunningham (or her lab) directly. There is contact info. in the thread I pasted. Once you have the kit, you can arrange through your ped to have a blood draw. With our medical group, we don't acutally need a Dr.'s orders for a draw, if we show them the paperwork with the kit. Some places do charge a fee for the draw. I also know some members have gone to independent labs for the blood draw. (I would imagine if you are drawing blood for other stuff anyway (eg. strep titers) then there wouldn't be a fee?)

 

3. When you get the kit, be sure to take out the freezer packs and put them in the freezer...once you have the serum (spun down blood) you will need those to mail the package (to keep things cool). When you go to fed ex...be quiet about what is in the package. I would also rec. drawing blood/mailing early in the week. If you mail on a thurs. or friday there is a chance the package will sit in the lab over the weekend (since nobody will be there).

 

4. The cost is now $400 (used to be $200)...but it does count as tax deductable (donation to Univ. of Oklahoma).

Edited May 13, 2010 by EAMom

[kimballot]

lboll,

 

As I recall, your son is in an exacerbation now. I know the blood needs to stay cold and needs to get to Kathy within 48 hours of the draw. Is it possible to ship it and have it there within 48 hours? It may also be possible to draw blood now and freeze it, then bring it back with you to the states when you come.

 

I would contact cunningham folks and ask about this. It would be a shame to miss this opportunity to test his blood during an exacerbation.

[Fixit]

Also, not sure of relevance....my ds was on taurine for 3 months prior to draw...at that time, though not healed he was in a better place...

there is a paper from peglem in regards to taurine and cam....my sons results came back 105 at that point...

was it the taurine....was he just not as sick...weird thing is at that point he was also produceing an exhorbinatn amount of taurine and docs added more???

(a thought just came to me) or was he just not absorbing it and that's why his taurine level came back hight????

 

i'm just saying don't add taurine right now

[lboll]

Wow, thank you both so much for the information. I really appreciate the time you took to help me out. I don't think it would be possible to somehow freeze his blood draw here. Unfortunately, it's very difficult to find people willing to the "think outside the box". However, I will contact the Cunningham people and get their thoughts on it.

 

Fixit: What is Taurine? I haven't heard of it before. My son is on 2 other meds which help with his behaviors: one is Guanfacine which is a blood pressure medication (it lowers it and helps calm him down). The other is Trazadone which helps him sleep at night. I wonder if these would interfere with the test results.

 

Thanks again,

[Fixit]

Taurine is an amino acid...its a supplement i was giving along with other aminos and vitamins

[lfran]

When I talked to Kathy about getting my DS8's blood drawn, she said that you don't actually need to use their vials -- as long as the lab you are using has the right kind.

 

Can you get it drawn and ship it overnight with ice packs? That's what we did. Are there any overnight international services?

 

Also, we ended up doing the test when my son was actually at a pretty low level -- simply because we were doing a draw for other reasons and I got tired of waiting. And he was still squarely in the PANDAS camp. So, it might serve as a baseline for you -- but of course, then it's more expensive.

 

Good luck.

 

Wow, thank you both so much for the information. I really appreciate the time you took to help me out. I don't think it would be possible to somehow freeze his blood draw here. Unfortunately, it's very difficult to find people willing to the "think outside the box". However, I will contact the Cunningham people and get their thoughts on it.

 

Fixit: What is Taurine? I haven't heard of it before. My son is on 2 other meds which help with his behaviors: one is Guanfacine which is a blood pressure medication (it lowers it and helps calm him down). The other is Trazadone which helps him sleep at night. I wonder if these would interfere with the test results.

 

Thanks again,

[EAMom]

Yes...ditto lfran.

 

The first time we drew blood dd was not in an exacerbation (had some low grade stuff) and she tested in the high PANDAS range. When we tested her a couple of mo. later (in an exacerbation) she was in the high SC range...the highest Dr. C had ever seen.

 

I thinking shipping serum internationally can be tricky...not sure who does that.