When will PANDAS be accepted in the medical community

[LaurenK]

When will PANDAS be accepted main stream? Any opinions from those who have seen PANDAS specialists?? We haven't seen any yet and the docs we have seen... well they haven't been the most supportive? this is frustrating!

[Dedee]

Well as my Mother would say.....Buck up girl, this ain't gonna be easy. Yes, it is frustrating. You will go through a wide range of emotions. Eventually I ended up pissed off at the whole medical community (and I'm a nurse!). So mad has gotten me through alot and I don't take much from any Doctor or their staff anymore. I realize ahead of time that most office's are going to think I am crazy and a bad parent before it's all over. So I can just let that go. You can't worry about what people think or you will go crazy. Come to the realization that you can't change the minds of most physicians and you are going to have to do things you never thought you would for the sake of your child. For example, I never thought I would lie to my physician to try to get a prescription for steriods for me so that I could give them to my daughter. OMG, how horrible right? Oh well, you do what you have to do to help your child live a "normal" life. In a perfect world I wouldn't have to do those things, but in a perfect world I wouldn't have my sweet brown eyed girl clinging to me afraid to go outside or leave my side. She wouldn't be crying or screaming at the thought of taking a bath because she believes there is dirt in the bath tub and the water isn't clean. Nothing about this disease is right and I will do whatever I have to do to help relieve the suffering of my children.

 

To answer your question, who knows when main stream medicine will come around. My recommendation is not to waste your energy worrying about that. Get an appointment with a specialist now. That is where you will get validation. Eventually, when your child is stable, you will come to a place where you will join the many who have taken up the cause of spreading the word about PANS. There are so many on this board who do wonderful things toward that cause. God bless them all. I do what I can in my small community. I think most PANS parents do. First and foremost, take care of your family, the rest will come later...

 

Dedee

Edited January 4, 2012 by Dedee

[LNN]

Deedee is very right. Grow a thick skin and get to a doctor who wants to help, not hinder.

 

I'm sorry you're still in the era where Pandas is "controversial". But it is light years better than it was a few years ago. Not trying to tell war stories about how when I was a kid I had to walk ten miles to school in the snow - up hill both ways. But rather to encourage you that it is changing and is getting easier to get our kids help, even tho it doesn't feel that way and is of little help as your kid cowers under the coffee table.

 

What has changed is due to parents speaking out, advocating, sharing and supporting each other, changing doctors' minds one child at a time. You will also find that integrative doctors, DAN doctors and those handful of specialists who have witnessed the before and after of Pandas are more willing to help. They get it. I think you will probably still feel frustrated but at least feel supported when you see a doctor who is "on the team". Then you can fight germs and not medical arrogance and ignorance.

[JAG10]

I completely agree with Dedee. You have a sick child. Your job is to find the most effective path of least resistance you can afford. You must preserve your energy for your child, yourself and your immediate family because you never know when this could get worse before better. Some parents have gone to speak with doctors armed with research, but honestly there are more failures than successes in that regard. Even if you are a medical or allied health professional like so many of us here, you would be surprised how quickly the professional courtesy dries up when you try and take a doc outside his or her comfort zone. There are members here who are physicians or have physicians in their own families who won't help or can't get them help.

 

I love my husband dearly, but have cut him to the quick if I feel he is not rowing in the same direction as I am regarding my girls' treatment and they are healthy because of my no-nonsense, eyes on the prize attitude regarding this-he gets it now too I have found it beneficial to seek out doctors and friends (many who i 'met' here) who will completely support me in my mission to keep my girls healthy and I choose simply not to get into it with those who need convincing. I know some will disagree with me and say we have a duty to pave the way for others and for those who have the energy and fortitude, great! My goal is to convince others by way of my healthy, asymptomatic, happy, successful daughters as proof.

[tpotter]

I will just add to what the others have said by suggesting that you find yourself a "team" of doctors...all PANS specialists and/or symptomatic to your cause. We see Dr. L, Dr. B., have seen Dr. K (and would go back to Chicago if it became necessary), have an LLMD who primarily prescribes the abx, have our pediatrician, who would talk the talk, but not walk the walk (wouldn't prescribe abx), and a DAN doc who will order whatever he possibly can for us (he's further away than the pediatrician, so we use the pediatrician for acute diagnostic stuff, and the DAN doc to fill in the loose ends that the others can't do, or are just too far away.) We now see a hem/onc and cardio for my DS, because of some issues that have recently come up. I have brought up their diagnoses, because they are significant, but I don't waste my time getting upset if they don't buy in. But, I use them for the specialty knowledge, and then bring that knowledge back to the PANS specialists and LLMD. Everyone of these docs that we have on our team we find critical to getting my children as well as possible. Keep in mind, though, that it was only 3 years ago that most of these docs even got involved. The only ones that drove me terribly crazy was the ER docs, who had no clue what they were doing, and would just leave DS sitting there in exacerbation (one time, I called the DAN doc from the ER, and asked if I could bring him over immediately. The ER was thrilled to let me do that!) But, I complained recently to administration at the hospital, had a long talk with the head of the ER, and they now have a "plan" on what to do with the "multiple PANDAS kids" in the community who have come into their ER (that was the head of the ER's quote!)

 

We've come a long way, and there's plenty more to go, but by digging in, and just refusing to accept the bull, you will, hopefully come out with yours and your children's sanity and health. But, focus on who you can use, and don't waste your time worried about what you can't change.

[kimballot]

I have to agree that my local doctors are much more accepting since my son has seen several PANS experts. I think the local docs were all afraid to make the initial diagnosis, but now that there are several doctors all concurring, the local docs are much more interested and when I see a new local doc they actually ask me questions like "when did you first start to realize the behaviors were tied to infection?" and "How many exacerbations has he had?". It is very validating at this point, I have to say.

 

As everyone else mentioned... I always bring the latest article to the doc... in fact - we are seeing a psychiatrist tomorrow. I am thinking about brining the Jenike & Dailey newsletter from IOCDF (http://www.ocfoundation.org/EO_PANDAS.aspx) since it talks about PANS - does anyone else have any suggestions for something recent that he might be interested in?