What is the best information to give to a new family experiencing the

[Minnesota Mom]

I have had a couple families contact me in the last couple of weeks about their children suddenly different. I live in MN and a year ago I was in the same spot these families are. I do not have any good local resources on doctors to see that have heard of PANDAS. There is one specialist at the U of M (where we got our Dx), but the urgency to get some help and the long wait to get into this provider doesn't help these families in desperation to understand what is wrong with their child. Any ideas?

[Missmom]

I am no expert but should start by making an apt. with either a specialist or someone listed as a treating doctor by someone recommended on this site or others like pandas resource network or Beth Maloneys site. Just find someone to make an apt. with. If the wait is long then they could go to an urgent care and demand a strep culture and the strep blood test. Hopefully that would get them some antibiotics to try in the meantime. I got a diagnosis from our pediatrician in march but can't get in to see someone with more experience until July. It has been hard waiting but at least my ds is on prophylactic antibiotics until then and hopefully we can get more testing done and start a good treatment plan. I can't emphasize enough how helpful it is to get started on treatment early. From what I have read here and on other sites the longer this goes on the longer it takes to get better. My son is finally doing well, but I can't wait until the day when he is completely healed from all of this mess. I know others will chime in but without a doctor totally committed to treating this there is not much else you can do.

[bulldog24]

Give them the link to the NIH study