Advice needed on testing prior to dr visits

[SearchingMom]

Hello,

 

Thanks to all who reached out to me after my first post about my ds11! Since then I've made contact with a PANDAS immunologist and have an appt in about a month (3-hr drive from our home). I still have the appt with a ped neurologist (30 mins from home) who may or may not do PANDAS (still working on determining that before our appt next week).

 

Here's what I need help with if anyone can chime in:

 

1) Since the immunologist is 3 hrs away, should I try to get bloodwork done before the appt with immunologist? Do you know if I should work with PCP to get the bloodwork done? If so, what tests should I ask for? Or will it be better to let the immunologist order tests after we meet with him?

 

2) I know there is a new lyme disease forum starting soon, but until then, can someone point me in the right direction to find an LLMD/ILADS dr? I just e-mailed the ILADS web site for the same info - don't know if they will respond with a list of drs near me or not.

 

3) I've been reading around the forum, and it sounds like I should have tests for both PANDAS and lyme done before any abx are given to ds11 (if that's the ultimate outcome, of course). If this PANDAS immunologist will test for PANDAS, but won't do the lyme testing, how should I proceed?

 

4) I just read a post about mycoplasma and a possible correlation with rages/angry outbursts. What is mycoplasma? (spelling could be wrong) My ds11 is having frequent rages and I would like to know more about this so I don't miss something that might help.

 

My thanks in advance,

SearchingMom

[AmySLP]

If your working with A PANDAS knowledgeable immunologist, they should be able to fax you the orders to have the labwork drawn prior to your visit. Seems like it's almost necessary to have it. Our first appt with Dr. B was to review hx & go over bloodwork results. Our initial labwork from Dr. B included tests for mycoplasma pneumonae & Lyme as well as numerous other tests. B/c many of those test have to be sent to specialized labs, results on some took 10-14 days.

 

Best Wishes,

Amy

[SearchingMom]

If your working with A PANDAS knowledgeable immunologist, they should be able to fax you the orders to have the labwork drawn prior to your visit. Seems like it's almost necessary to have it. Our first appt with Dr. B was to review hx & go over bloodwork results. Our initial labwork from Dr. B included tests for mycoplasma pneumonae & Lyme as well as numerous other tests. B/c many of those test have to be sent to specialized labs, results on some took 10-14 days.

 

Best Wishes,

Amy

 

Dear Amy,

 

Thanks for the reply! I just spoke with the dr directly this afternoon and he confirmed I should be able to get the bloodwork done with my PCP. I got the names of the tests (AntiASO and AntiDNaseB) to be done prior to the appt, plus I will be getting my ds11 tested for lyme (long history of embedded ticks over last seven years). Dr said he could test for co-infections after this initial bloodwork if needed. And the dr was willing to move the appt up a week sooner, too.

 

Angela

[AmySLP]

Just be sure he/she doesn't write off your child if those titers are not up-especially if your child has other evidence of strep (rapid or cultures).. My children are part of a subset of children whose titers do not rise, despite positive strep tests time after time. It is not necessary to have a rise in these titers to have PANDAS.

 

Good Luck, Amy

[peglem]

As long as you're getting blood drawn, why not also get an immune panel:

total IgG and the 4 subclasses, IgM, IgA, IgE? My kid is a low titers PANDAS also, and she has imune deficiencies as well. Also, (in the interest of poking your child as few times as possible) ask for the IgG and IgM for mycoplasma pneumonia (which I think can also be a lyme coinfection). If you have to drive 3 hours to see this immunologist, I'd sure want to have as much info as possible to make the most of the visit.