Cunningham's Test for our 3 boys sitting on the kitchen counter&#3

[3boysmom]

Well I can not believe we are now going on a year of dealing with this illness! Our ds10 has come a LONG way since a year ago. He has been on Augmentin XR 1000 twice a day for 6 months now. After trying to figure all of this out and teach the local doctors here in Texas (familiar story-Texas needs help with this)...we finally decided that it wasn't worth the wasted time and we went to see Dr. L. in Maryland last month. She confirmed what many of you have said about a high sibling rate with this illness. Well when the 10 year old son got PANDAS, the 9 year old son got HSP, and the 8 year old son began head tics and attention issues....not good signs. She advised us to get the Cunningham test for all 3 boys and titers tested for all 5 of us. Also the 10 year old already has his tonsils and adenoids out, but the other 2 are scheduled for Nov. 17th for both of them to have T & A surgery. (And the dog has been treated) She does not want our ds 10 to begin the steroids until after the Cunningham test. Well the test kits arrived 3 weeks ago...the pediatrician is NOT acting on the request for lab orders. THOSE OF YOU WHO HAVE HAD THIS TEST RUN...PLEASE ADVISE ON THE STEPS TO FOLLOW!

 

1. Do we call the Lab and make our own orders? (Quest...Lab Corp?)

 

2. Do the 5 of us just show up with the test kits and verbal requests/emailed directions (from Cunningham's Lab) for tests?

 

3. Can we request one blood draw for the 2 different tests (1 for Dr. Cunningham and 1 for the titers)? (Is it easier to just make two different lab visits-because the Cunningham blood needs to be "spun"?)

 

4. Where do the titer's tests get sent to? (Cunningham? Latimer? Pediatrician?)

 

We need to act on this soon because the T & A surgery will be soon and they need to give more blood for that. Also our ds10 really needs to begin the steroids as Dr.L thinks that he was sicker than we knew and that the antibiotics alone are not enough for him right now.

 

Thank you all in advance...what would we all do without each other?

 

Linda S. (3boysmom)

Edited October 16, 2010 by 3boysmom

[EAMom]

1. Do we call the Lab and make our own orders? (Quest...Lab Corp?)

There should be instructions inside the box. Also, tubes and ice pack (take the ice packs out and put in the freezer until you are ready to fedex the samples.)

 

We used the lab associated with our medical group. (I think some other folks have used quest etc.) For us, a doctor's orders were not needed as long as we had the forms (inside box) saying it was a University Study. You could call ahead and see if that is the case with your lab.

 

3. Can we request one blood draw for the 2 different tests (1 for Dr. Cunningham and 1 for the titers)? (Is it easier to just make to different lab visits-because the Cunningham blood needs to be "spun"?)

 

4. Where do the titer's tests get sent to? (Cunningham? Latimer? Pediatrician?)

 

do you mean ASO/anti-dnase b titers?

 

I think you would need a doctor's orders for the titers (at least we would for us). For us, the lab would just keep/run the blood needed for other tests (such as ASO titers) and then our local doc would get the results (which could be sent to Dr. Latimer or whoever you want).

 

The lab should be able to get the blood for Cunningham plus ASO/antidnase b all in one visit (poke/stick), but you should check with them.

Edited October 16, 2010 by EAMom

[KaraM]

Ditto for us:

 

We had an order for an ASO/Anti D NAse B from our pediatrician (that we basically demanded), but no doctor order for the Cunningham Test.

 

We just brought the Cunnigham kit with us and showed the paperwork.

 

The plebotomist drew the blood for the ASO/Anti DNAse then just continued drawing into the Cunningham tubes for that test.

 

I then took the box to a Fed Ex depot and shipped it out.

 

The ASO/Anti DNase B results went to the doctor (and were elevated, hah!).

 

However, I do know someone that just brought the kit to a local phlebotomy lab without any doctor order. The phlebotomist questioned whether they could leave with the blood, but checked with her supervisor and all was fine.

 

I agree, it's worth a call to the lab so you don't waste a trip.

 

Kara

Edited October 16, 2010 by KaraM

[amyjoy]

what state do you live in? if anywhere in california, then i will be happy to write an order to the lab for you!! i don't know about out of state, though...well, i may have a couple of ideas depending where you live.

[3boysmom]

what state do you live in? if anywhere in california, then i will be happy to write an order to the lab for you!! i don't know about out of state, though...well, i may have a couple of ideas depending where you live.

 

 

We live in Texas. Thank you, Linda 3boysmom

Edited October 16, 2010 by 3boysmom

[3boysmom]

We live in Texas. Thank you!