Educating Pediatricians - How?

[airial95]

Reading some of the other threads here lately about education and awareness, and thinking about my personal expericiences with this condition I began wondering what can we do to spread the word to the regular old pediatricians.

 

I'm very lucky - my pediatrician is a believer, was the one to dx and has no problem when I drag my kid in for a swab because he's acting "off" and he'll hand out the abx for as long as they're working. I wish I could clone my pediatrician and plant one of him in evey city in the country for PANDAS parents to have a local resource!!

 

I sort of look at him as the "Gatekeeper". Our pediatricians are the first ones we go to when we suspect something wrong. And as far as verifying strep - they're more conveinent for most than going to see any of the big PANDAS docs.

 

Don't get me wrong - we all need to have one of the big PANDAS docs in our corner, as much as we love our ped, we see Dr. Murphy as well. It's a team approach the whole way.

 

I just think it's unfortunate that when new parents come on here and are struggling for answers, the best we can do is tell them they have to travle across the country somewhere to even start getting help.

 

I know Beth Maloney has been focusing on the medical schools - which is great, because we'll be catching the next generation of doctors (hopefully). But what about now?

 

This is not a new question, and has been asked before, but its something I couldn't get out of my mind this weekend!

[SSS]

You are fortunate. And I know there are some others who are fortunate.

 

I'm sorry, don't mean to sound negative.

I tried to educate/bring PANDAS to our insurance Dr.'s. I had CamK test, written summary with strep timeline, symptoms, etc.

They point blank told me:

We offer free throat swabs, but only give a treatment course of antibiotics if the culture is positive.

Point Blank. Do not understand PANDAS, nor care to.

If we change our insurance for our family of 5, which means I may or may not get help from new insurance Dr.'s, it would be a crap shoot, it would cost us an extra $300+ a month.

And, I just don't have the fight in me anymore.

I would rather pay my $250. for 30 minute fee with our cash only PANDAS Dr. who gets it, who actually helps and understands how to treat my daughter.

Yes, that means I pay full price for prescriptions at a compounding pharmacy, and I will be paying cash for our IVIG- but I am going to do it through Corham Center, which is close, and really is not a crazy price. (But cannot do more than 1, maybe 2 way down the line if necessary.)

I think it all depends on the insurance company, and the individual Dr.'s themselves- I actually like my Ped. for my kids, but his hands are completely tied as to what he can or cannot do (HMO)

[MomWithOCDSon]

I find myself somewhere in between optimist and pessimist. I guess our own experiences can't help but color how we see this issue.

 

Beth Maloney isn't just out after the medical schools; her postcard campaign a year or so ago now was aimed at getting the word to our individual doctors' offices, therapists, psychiatrists, etc. I took those cards with me to each subsequent visit, but when they balked at putting a stack out for their customer base, I didn't push it with them. At least up to this point, they've all been willing to help my child, and I couldn't put that in jeopardy by alienating them about being willing to treat the "world" now.

 

In my area, the biggest problem is as follows. It's not the individual pediatricians that are so resistent; it's that many of them take their leads from the exalted "gurus" among their individual medical groups . . . those docs who have made names for themselves as heads of departments at major hospitals, publish frequently, teach at the medical schools, etc. He sets the policies, for the most part, and if he's not willing to at least consider the possibilities, let alone "believe," you can almost forget being able to gain any major ground with any of his acolytes. Also, this particular know-it-all refuses to see PANDAS kids or perform any review or analysis of their medical histories; unless they have identifiable immune deficiencies, he immediately refers them out to psychiatrists. And even with immune deficiencies, he is unwilling to connect any tics or OCD or anxiety to those immune issues. He's even written papers nay-saying PANDAS in which most of his quoted sources are . . . . drum roll please . . . HIMSELF!!! What is it Daffy Duck says in the cartoons? "What a marroon!!"

[peglem]

I'm one of those who has a wonderful pediatrician who takes the trouble to do the research. He teaches as well and made my daughter a case study for his students. He is so on board with figuring this thing out. I'm blessed for sure. But he has received flak from the other doctors in his practice over treatment for my daughter and he gets crap from specialists he sends her to as well, though he finally managed to get an immunologist on board from "the other side." I'm doubly blessed in that he doesn't let this stop him from doing the right thing. I told him from the get go that God would bless him for helping my child...and I still believe that he will be blessed....someday.

[thereishope]

I agree with Nancy that if you find a pediatrician that is open to possibly treating your child or keeping them in maintenance, they often feel they need to refer to the main local hospital. My current ped spoke with a neurologist and I think infectious disease without my knowing when we had a discussion on prophylaxis.

 

But the first step I suppose is to get that ped to at least look into it, read about it, and for God sake at least run a few tests! We still read about pediatricians who refuse to do strep tests upon request! That's just ridiculous. Every appt, I go armed with my papers in the event I need quick info to give. The doc will say they will do their own research, but you just don't know how much they'll look up or where they find their info. There are still hurtful articles and studies resurfacing and forever floating around the internet.

 

It would be nice to have a trifold available in each examining room like they have for other illnesses. It may catch the attention of a waiting parent.

Edited February 21, 2011 by Vickie

[nicklemama]

I just finished reaading Cure Unknown by Pamela Weintraub about lyme disease. My son doesn't seem to have lyme but this book was a real eye opener about how diseases get recognized and treatment established. You will not believe it.

[airial95]

I know we all work very hard within our own medical teams to spread education and awareness. I guess I was sort of feeling guilty for having such a solid resource in my local pediatriican that I was wondering if there was some organized way we could make a push on that end...wishful thinking I guess!

[thereishope]

It's not just wishful thinking! Good ideas start from that. Have you asked your ped what he thinks is the best way to "educate" other pediatricians in a way that they won't get defensive and be open minded?

 

I know we all work very hard within our own medical teams to spread education and awareness. I guess I was sort of feeling guilty for having such a solid resource in my local pediatriican that I was wondering if there was some organized way we could make a push on that end...wishful thinking I guess!

[airial95]

Vickie,

 

My pediatrician recommended today some new - fangled genetic testing that might be helpful for my son (see other thread I posted). In our email correspondence today, I concluded by telling him that we needed to have a SERIOUS conversation about how to make more pediatricians like him!