TS and Cam Kinase

[P_Mom]

Hi!

 

I was just wondering if anyone on the TS forum, with a child diagnosed with TS, had or has thought of sending their child's serum in to Dr . Cunningham's PANDAS study.? I personally think it would be highly beneficial for us to see the difference (if any) in the levels of Cam Kinase (as well as other antibodies tested) in TS kids as opossed to PANDAS kids. TS kids are supposed to have low activity....I believe......as opossed to the higher levels in PANDAS and Sydenham's chorea. I guess I am just trying to see the validation of it all......if this is indeed how the Cam Kinase levels fall for these two disorders.

 

My sons results were consistent with their PANDAS diagnosis...and...consistent with illness severity.

 

Younger son (much worse presentation) Cam Kinase of 162. Upper end of PANDAS levels

 

Older son, (VERY mild to absent symptoms) Cam Kinase of 112 Very lowest end of PANDAS levels (even overlapping with normal)

 

Has anyone done this....or would consider it?

 

Thanks!

 

Kelly

[powerofprayer]

Kelly,

I've been in touch with Dr. Cunningham to find out more about her tests. I'm not sure I fully understand what her tests can show. From what you know, will it show that the subject definitely has PANDAS vs TS vs SC?? That's where I'm unclear. Did she give a treatment plan based on your childrens' results? I was considering this, but then I saw the $200 price tag and I'm not sure it's worth it if it's not going to give me any clear cut info.

[P_Mom]

Hi Powerofprayer......

 

I wrote you a response then lost it! UGH! Hate that.

 

So, only got a moment....if you send me your e-mail, you can send it personal message if you like, I will send you papers she sent me explaining her tests.

 

I think it would be helpful to see where TS diagnosed kids fall.

 

Kelly

 

Oh, the $200.00 is not mandatory...she asks for it "if you can." They received my kids serum and started running the tests before I sent my check.

 

No, it is for research only...she is trying to find out just that...if this test can be a test indicative of TS, PANDAS, SC.

 

No, no treatment plan....however, if this all pans out, you can use your results to show your doc and help to get the correst diagnosis and treatment. She tests for other antibodies present in these kids too besides Cam Kinase....dopamine, antilygangliosides (sp), etc. These also correlate with PANDAS etc. So far, the tests have been consistent.... mine were.

[kim]

Kelly,

 

Is it $200.00 per sample that you send in or is it 200.00 for all, assuming I do both boys and myself?

 

I just want to say that I think this is a good idea too. Anyone who has been here for a while knows that I never considered my boys PANDAS mostly due to the lack of abrupt dramatic onset that some PANDAS parents describe. After spending the last couple of months on the PANDAS forum, i'm becoming more and more convinced that there is an overlap. Also, early Jan. I found myself with an infection induced autoimmune reaction. Too many coincidences here!

[Char]

Hi,

My son was never officially diagnosed with TS but the doctors said he had tics and would grow out of having tics. He started having tics, temper issues, light sensitivity, leg pains, hated crowds at 3 and a half. I took him to the doctors and they said he had tics and to ignore them. At that appointment the doctor said his glands in his neck were swollen but never checked him for strep That makes me so mad!! So my son is 8 now. Over the years he gets strep 1 to 2 times a year. I didn't know what Pandas was until I joined this forum. So I have been going back and forth between Pandas and TS. I could never get any doctor where I live to Prescribe a trial of longer antibiotics. So that is why I decided to do the Cunningham's research study for Pandas.

His Cam-Kinase II score was 137 in the Pandas range. So now I finally have some proof . I am taking my son back to the doctor today to try to get a trial of longer antibiotics. I really hope he agrees. I am also bringing the study to show my sons doctor. I plan to see Dr.L soon. I just wish I knew about Pandas before now. Char....

[Char]

OOPS, I meant to say, I just wish I knew about my son having Pandas before now:(.....Char

[P_Mom]

Kim....$200.00 total....meaning per shipment which could contain all 3 of your samples.....I did both my boys (wish I did myself, too) and it was $200.00. I agree...good idea to have done.... Thanks....Oh, and keep me posted on what you decide to do.

 

Char....glad you have some more concrete evidence....I think she is really on the right track with this study. I think so many kids just get stamped tics...just tics... or even TS....having no tests to really prove what the heck is exactly going on and why!??

 

Hope more on this forum would consider doing it as well!!

 

Thanks Again!

 

Kelly

[powerofprayer]

Hmmmm, you do present a good argument, Kelly! So she WILL run these tests w/o the money? Why on earth would anyone pay then?

She did tell me that i could send samples for both myself and my dd for the $200. She sent me some papers too about her study but i did not understand them at all. I'm guessing you have the same ones?

Is one called " Antibody-mediated neuronal cell signaling in behavior and movement disorders"? Maybe i just need to go through them more slowly.

Neither my dd nor myself have ever been diagnosed with TS though i've dealt with it long enough, I'm nearly 100% sure that's what it is. BUUUUUT, yes, wouldn't it be nice to know for sure.

We are a military family......I wonder if our little lab at the MTF here will draw the samples for us? Anyone? How did you go about getting the serum sent to Dr Cunningham? Don't labs need some kind of drs orders before they draw blood?

[Megs_Mom]

My understanding is that the Cunningham Lab is not funded for this research right now - they are essentially continuing the research both out of interest, and also to help parents with serious issues better understand the disease that their children have. The techs there often run test on their own time. They offer if for the cost of shipping, just to try to offset the high fees that they pay for shipping & test materials. I think if we can pay - then we should. I am so hopeful that they will be able to continue this testing for more parents - it is desperately needed. If the fee is beyond a reasonable level for a family, then you should not pay - they are very kind about this. For families that can afford this, we are a community and need to support each other in ensuring this research is available to all that need it.

 

Both our Ped office and a local LabCorp will pull & spin blood for a research study - it's pretty common. Just call ahead to the lab to check. Good luck!

 

Hmmmm, you do present a good argument, Kelly! So she WILL run these tests w/o the money? Why on earth would anyone pay then?

She did tell me that i could send samples for both myself and my dd for the $200. She sent me some papers too about her study but i did not understand them at all. I'm guessing you have the same ones?

Is one called " Antibody-mediated neuronal cell signaling in behavior and movement disorders"? Maybe i just need to go through them more slowly.

Neither my dd nor myself have ever been diagnosed with TS though i've dealt with it long enough, I'm nearly 100% sure that's what it is. BUUUUUT, yes, wouldn't it be nice to know for sure.

We are a military family......I wonder if our little lab at the MTF here will draw the samples for us? Anyone? How did you go about getting the serum sent to Dr Cunningham? Don't labs need some kind of drs orders before they draw blood?

[P_Mom]

Yes, I agree with Meg's mom...IF you can pay...well, it would help them out...HOWEVER, if you can't, you shouldn't let that hold you back from testing.....it is too important. Also, if you can't pay the $200....perhaps a smaller amount would work better?

 

Yes, powerofprayer...those are the papers....just read them slowly some day when you aren't tired or pressed for time....(If that is possible:) I was wondering how I was going to get it done also with no doc's orders. It ended up I just went to get lab work done...showed them the whole box, papers, etc.....oh, and an e-mail from Kathy with instructions...and they took it from there!!

I handed them the box with the return shipping label and little cooler, the vials, the signed papers, and off they went with it after the blood draw and they called Fed Ex and everything. It was simple. I let Kathy (Dr.C's assistant) know it was coming and she sent me a confirmation e-mail the next day that it was received. No doctor order needed!!

 

Keep me posted!

 

Man, I am kicking myself now for not sending in a sample of my serum....having two boys with it...and with my family history....my anxiety.....I wonder what my result would be??!! Would it show the genetic link?? Heck, I am going to contact her tomorrow and ask if I can send mine! Too curious!

[bmom]

I would like to send my son's sample in, but does timing matter? Does he need to be in an PANDS episode? He has been having some minimal symptoms, but not like before IVIG. Should I send it in now? Would the IVIG affect the test results?

[ilovedogs]

So, what kinds of tests are done? Urine or blood tests or both? We live in AZ, how do we get the tests done here?

 

Not sure my ds would stand for a blood test anyway, but this is something I'm interested in.

[P_Mom]

BMom,

 

Neither of my boys were in a "PANDAS episode" when I had the draw. Though, they did have slight symptoms, younger son more so, from a recent illness at time of draw. They still scored in PANDAS range...I wonder where they would fall when in episode...especially my younger who was still high even though doing well...yikes!

 

Dr C told me that if your child is not in episode, they may, and I stress MAY, test normal...and those results could be used as a baseline. It just depends.....it seems that the PANDAS still registers even in non-episode...that is what the majority of the results are saying. Nno, I don't believe IVIG should effect the results.....atleast it hasn't for a few kids who had it done after IVIG...they still scored in PANDAS range.

 

I would send it if I were you...still minimal symptoms...just like my kids.

 

 

On another note...I have to wonder if the Cam Kinase dies out with puberty/age...just like PANDAS is supposed to die out or dramaticall improve??!! As well as the other antibodies she tests for....so, if I send in my sample......would it still show high levels?? (If I ever had them) If not... it could just mean they "disappeared" with age......right? I don't know... any thoughts?

[lss]

[quote name='bmom' date='Sep 15 2009, 09:17 AM' post='38172'

 

I would like to send my son's sample in, but does timing matter? Does he need to be in an PANDS episode? He has been having some minimal symptoms, but not like before IVIG. Should I send it in now? Would the IVIG affect the test results?

 

 

Hi BMom,

 

 

 

We were one of the first to do Dr. C's test. We did it prior to getting IVIG with Dr. K back in May. We also did the PEX with Beth Latimer on Sept. 9-11. We scheduled a appointment with Dr. Latimer last month while we were in DC. She is worth the trip, she understands these kids as do the other doctors at Georgetown. While we were there, the PEX nurses and the sedation doctor, who did her residency here in Dallas, could not understand why we would have to travel to DC for PEX!

 

BTW, not all hospitals do PEX, at Georgetown, they had a special team that works with the hem/onc doctors. If you want more information, please call me.

 

Linda

[powerofprayer]

Just to update on this topic.....i DID finally get this test done last week. Just awaiting results now....... can anyone of you who had it done tell me about how long it takes for results??