Questions for Immunologist? Help requested!

[MissionMama]

Oh, what a fabulous group....

 

My first post outlines our "story"....topic title: PANS/PANDA with negative ASO titer? So desperate!

 

My goodness how much I have learned here just in the past 48 hours. THANK YOU.

 

I am hoping I can get some good input as to a list of questions to have prepared for our appt. with the immunologist on Tuesday (11/12). I have read about the basic blood work ups, titer this titer that, lumbar punctures, puncture this puncture that, this bacteria, that parasite, tick, fleas....I am afraid my head is swimming trying to pull out relevant information!

 

So....have at it, redirect me to another post if I am making a total annoying redundant newbie request here. I can take it, trust me.

 

Thanks in advance,

 

Kristi (on a) MissionMama

[mdmom]

If you are seeing an immunologist well-versed in PANDAS/PANS, disregard the following advice.

 

Be prepared for the doctor to push-back when you bring up the possibility of PANDAS/PANS. Many doctors that don't understand it will just dismiss it. Be strong. Trust your instincts. If the doctor is not willing to partner with you, find another doctor that will.

 

In the event that the doctor seems at least interested in the dx, take copies of these articles with you:

 

http://www.ocfoundation.org/PANDAS/

 

http://pandasnetwork.org/wp-content/uploads/2012/02/2161-0665-2-113.pdf

 

Educate the doctor and remind him/her that the research is coming right from the National Institute of Mental Health (NIMH).

 

 

 

[pr40]

another note of caution, you don't want to be in position to either educate or convince this immunologloist. and be careful, many drs today say they believe in PANDAS. Great for them. That is not enough. they have to be willing to TREAT when there is no obvious proof of ongoing infection, as they would do in case of rheumatoid arthritis

so, make sure that YOU know what you want from this apt. is it long term abx, steroid burst, IVIG or something else

if it does not work, there are more and more competent drs who are willing to treat PANDAS. tell us where you are and someone will give you a name.