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midwestmama

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  1. I would say please do try to get to one of the other PANDAS doctors if you can get in before your follow up with Dr. Elias. She also has an excellent reputation but it sounds as though your son needs treatment asap and if someone can see you sooner, that seems like a good course of action. From what you are describing, it certainly sounds as though an eval by a PANS specialist is appropriate, and you probably know from your research that kids can have PANDAS/PANS without any positive blood markers at all--of my kids, only one had high strep titers and nobody had abnormal iG counts in either direction. It's a clinical dx, which is one reason it's important to see an experienced doctor You cannot exclude PANDAS based just on labwork or tests. You may find many of us on this forum have seen several different physicians over the course of our kids' illness, either for second opinions, confirmation, help with related problems (my kids ended up seeing cardiologist and immunologist to rule out other complications/ conditions), so don't feel as though you are doing something wrong if you seek out another physician while waiting for your follow up. Good luck and hang in there.
  2. You and your son are in my thoughts and prayers. Agree with the other posters who said to have your bipolar son checked...When you find a good PANDAS doc, you may want to bring both in to be seen as a) PANDAS can look a lot like bipolar, and it may be worthwhile to rule out any autoimmune stuff with everyone in the family and treatment and healing will happen fastest if everyone is treated and healthy in the house (no hidden infections). Latitudes and pandasnetwork both have lists of drs--my advice would be to choose a PANDAS expert (one of the "big ones" frequently mentioned here and id'd as expert on the lists) and start calling to see who can fit you in soonest for a consult. If your son is not able to travel, many of the drs will do a phone consult. Phone consults are not covered by insurance, and you will find, if you haven't already, that most of the PANDAS experts don't take insurance anyway, for a variety of good reasons. I know this is an overwhelming time and the cost is one more overwhelming thing, but for us it was absolutely money well spent. When you call the offices, share with them about what's going on and ask for the earliest possible appointment. If you are at a loss, you can also try calling NIH (Dr. Swedo's office). There may be trials open where some of the dx workup can be done at no charge (this was the case last year) even if treatment isn't included. If nothing else, they are sometimes very helpful in giving you an idea of where to look or what tests to ask for. Hugs and prayers. Hang in there. Have you read 'Saving Sammy' and many of the posts on this forum? These can be tough days but it will get better. Your sons are lucky to have you in their corner.
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