filinha1

Hi All, I have a friend looking for recommendations for a PANDAS-friendly pediatrician in the Westchester NY area. She has an appt. with Dr. B which is not until October and can't find anyone to give her abx until then. Or, if anyone can recommend a different doc who will likely see her child before October, that information would be welcome. She's willing to travel but has four children, one of whom is an infant, so her preference would be to find someone more local first if possible. Thanks, Heather

I believe that as a NP she specialized in pediatrics and she works part-time at a pediatrician's office, but she treats both kids and adults for Lyme.

Hi, My daughter is being treated by Kayleen and we like her very much. Feel free to pm me if you have specific questions. Heather

I just pm'd you.

Anyone know of a PANS-friendly pediatrician in the Baltimore / Annapolis area?

It definitely counts as one of the coolest jobs ever!

Wishing your son and your family the very best for this surgery and a speedy recovery.

From this short news clip it certainly sounds like Tyler has PANDAS, poor kid. Regardless of what else other than PANDAS may or may not have been going on with Tyler, I'm not going to keep my daughter's diagnosis any more private than I currently do. I'm not too keen on dd herself finding out about this story for her own sake - she is only 11 and has enough self-doubt and anxiety as it is. We homeschool her, so we don't have the pressure of worrying what other kids might say or that school personnel might put her under a microscope for strange behavior. I do sympathize with those concerns. I think I'll take this opportunity to tell any interested parties what I know - and don't know - about PANDAS/PANS, when and if it comes up. Any friends and family who were going to steer clear of us and our 'problem' have already done so. (Not too many thankfully). I can hardly imagine it would be harder to deal with strangers who might do the same. Maybe one of the best things we can do for our kids, one of the most honorable things, is to tell the truth as we understand it, about their illness. Heather

Husband's undergrad is systems engineering - are we going to get your thoughts on the results?

Great suggestion. Paying it forward in time, money or both for more research is often the only control we have when it comes to this illness.

Agreed, lot's of money would be saved, but probably only in the case of the smaller percentage of people who swim upstream. I think insurance companies count on most people choosing the path of least resistance when dealing with any illness whose presentation has a significant psychiatric presentation - psychotropic medication. This is also the least expensive for them as those pathways - psychiatrists and drug company pricing - have been well established. Adding the insurance piece to any complicated disorder is crazy-making. Our insurance will only pay for the first visit with any new specialist, after which we have to get pre-approval or pay out of pocket. In our desperation at times to get timely treatment we have chosen to forgo the pre-approval process and just get the help...and paid out of pocket. We have also paid out of pocket to cover psychiatry rather than have our daughter labelled with a catalog of acronyms - BPD, OCD, ADHD, ODD, GAD - that may affect coverage in future. I don't have what it takes to find the best docs and treatment for my daughter and fight our insurance company at the same time. I admire people who can take both on - get help for their loved one and make sure it gets paid for. So far, our insurance company is way ahead in this game. EA, I went on a bit of a tear about insurance and didn't carefully read your post, but your point is true - IF more mainstream docs were attuned to Lyme then time, money and effort could be saved for all parties.

Agreed, lot's of money would be saved, but probably only in the case of the smaller percentage of people who swim upstream. I think insurance companies count on most people choosing the path of least resistance when dealing with any illness whose presentation has a significant psychiatric presentation - psychotropic medication. This is also the least expensive for them as those pathways - psychiatrists and drug company pricing - have been well established. Adding the insurance piece to any complicated disorder is crazy-making. Our insurance will only pay for the first visit with any new specialist, after which we have to get pre-approval or pay out of pocket. In our desperation at times to get timely treatment we have chosen to forgo the pre-approval process and just get the help...and paid out of pocket. We have also paid out of pocket to cover psychiatry rather than have our daughter labelled with a catalog of acronyms - BPD, OCD, ADHD, ODD, GAD - that may affect coverage in future. I don't have what it takes to find the best docs and treatment for my daughter and fight our insurance company at the same time. I admire people who can take both on - get help for their loved one and make sure it gets paid for. So far, our insurance company is way ahead in this game.

Kara, I just tried to pm you to say hi, but your box is full. Heather

Interesting. I find it hard to place a lot of blame squarely in the lap of a researcher like Steere; he may be guilty of being incorrect in his conclusions and may not be asking all the right questions in the first place, that much is true. But Steere clearly isn't a dummy and likely isn't an uncaring monster. When there is equally compelling science that contradicts research like Steere's, I blame our insurance companies for adhering to the views of the side that costs them less. After all there are two diametrically opposing viewpoints in the medical establishment - not the mainstream and some fringe noisemakers, but heavy-hitters on both sides. If ILADS came out with some miracle protocol that worked and cost less than 3 weeks of doxycycline, insurance would be happy to accommodate. I think our best bet is to lobby our local and state politicians, to force laws that require insurance to pay for treatment that a licensed physician has prescribed for his patient. Heather

Yes, thanks! Good read and pass-on-worthy for relatives who still don't quite get it, i.e. "If it's 'real' then why is there still a controversy?"