trying to get answers

[Mary M]

The advice provided here is wonderful. I have nothing more to add other than to say we've all been where yo are now. It certainly feels overwhelming but this group is so supportive. Parents know their children best, and you know your child needs something more than what is being provided by the medical community. Keep pushing for you r child's well being and know that we are all here to support you.

Mary

from Michigan

[kamkoop01]

Hello!

 

I strongly recommend that you consult with a "real" PANDAS expert, so that you can rule PANDAS in or out with some confidence. The fact is most doctors -- even those who are essentially unprejudiced and responsible at heart -- DO NOT CURRENTLY HAVE AN ACCURATE AND UP-TO-DATE UNDERSTANDING OF PANDAS/PITAND! My child suffered for years before we were fortunate enough to be referred to a brilliant adult neurologist, who is a true brain scientist, who really looked at the big picture (as opposed to looking at a measly few minutes in an examining room), and who thereby readily arrived at a PANDAS/PITAND diagnosis. However, when we then consulted our local purported "PANDAS expert" pediatrician, we were dismissed out of hand. It wasn't until we got in to see one of the national PANDAS experts that our brilliant adult neurologist's diagnosis was heartily confirmed, and we were able to move forward with treatment.

 

Keep looking for answers! (And remember, doctors can be wrong sometimes, just like the rest of us!) Good luck!

 

Tenacity

 

 

if i could find a specialist for PANDAS here where i live i would get him there fast. our pedi did feel he may have it but did a culture and that was it and it was negative so she just didn't go any further. my son goes this up coming tuesday for allergy testing that was referred by our pedi so i am curious to see what the out come will be he is also having the immunology test done but i did look on the work up order yesterday and it is not testing titers like i have seen posted on here before. my next step after doing allergy testing and if no answers there back to pedi to be referred again to a neuologist. the first childrens hospital we went to when he was 6 is supposed to be the best but we didn't get really any answers we didn't already know. my friend took her son last week to that same hospital and when she brought up PANDAS she said the dr just didn't really go with it. they just don't have any information i guess on it being it is rather new to them. she also brought up allergies like i did and they said same to her but her son's has to do with milk products and the dr didn't really buy into it either. well my opinion is if you are making changes at home and see a difference in your child then that is a start to something.

i did forget to mention that we had new carpet put in upstairs where his room is on july 22-23 and he woke up on the 25th with this new out of the blue head popping/shaking tic. i really really hope the allergist can find something.