Dr. K's presentation at OCF Conference

[kimballot]

Well, thanks for straightening that out for me! No, interest in joining the email list- she irritates me! I respect that she shared her experience and brought attention to PANDAS. Just feel like her celebrity status is overdone and her experience is overgeneralized.

 

Anybody ever seen that website "SHUT UP ABOUT YOUR PERFECT KIDS!"? Its done by 2 sisters who both have children w/ disorders- its kinda funny.

Just looked up the website

http://www.shutupabout.com/index.php

 

Loving it! Will be sharing with others. Thanks!

[Johnsmom]

OMG I have heard of this but never looked it up. thanks for the laugh!

 

 

Well, thanks for straightening that out for me! No, interest in joining the email list- she irritates me! I respect that she shared her experience and brought attention to PANDAS. Just feel like her celebrity status is overdone and her experience is overgeneralized.

 

Anybody ever seen that website "SHUT UP ABOUT YOUR PERFECT KIDS!"? Its done by 2 sisters who both have children w/ disorders- its kinda funny.

Just looked up the website

http://www.shutupabout.com/index.php

 

Loving it! Will be sharing with others. Thanks!

[peglem]

Okay, PANDAS MESSIAH, definitely a better pseudonym!

 

you crack me up Peglem. I see Jag10 PM'd you the message from the "PANDAS MESSIAH"

 

Did she even have the courtesy to do a spell check on his name????? I can only speak for myself, and being 4 weeks post IVIG, I'd like to tell her where to go! Thanks Beth!

I'm confused! (wish that feeling was more unfamiliar!) Was the email sent by the famous, self-proclaimed authority?

[EmersonAilidh]

Well, thanks for straightening that out for me! No, interest in joining the email list- she irritates me! I respect that she shared her experience and brought attention to PANDAS. Just feel like her celebrity status is overdone and her experience is overgeneralized.

 

Anybody ever seen that website "SHUT UP ABOUT YOUR PERFECT KIDS!"? Its done by 2 sisters who both have children w/ disorders- its kinda funny.

 

Who is this mystery emailer?! I am so lost. D:

[EAMom]

I sent you a PM.

[peglem]

Well, thanks for straightening that out for me! No, interest in joining the email list- she irritates me! I respect that she shared her experience and brought attention to PANDAS. Just feel like her celebrity status is overdone and her experience is overgeneralized.

 

Anybody ever seen that website "SHUT UP ABOUT YOUR PERFECT KIDS!"? Its done by 2 sisters who both have children w/ disorders- its kinda funny.

 

Who is this mystery emailer?! I am so lost. D:

Check your PM

[ajcire]

I just might be the only person not totally irritated by her. Everything is biased. People's opinions on doctors here are biased to who helped them as well. I think that just as irritating as it is for us to see her say you need high titers and that antibiotics are the way to go, I kinda feel equally irritated hearing that IVIG is the only way to go. Each child's needs are individual. Clearly pandas is not one size fits all...

[thereishope]

Okay. I think maybe I should let this thread rest,but now I need a copy of that blast:)

 

I am confused about the whole antibiotics alone cannot help some children long term (and I mean more than one sole child). IVIG cannot help a child alone long term if they contract strep. I'm confused. Even though I don't need Dr K right now, perhaps he needs to allow parents to provide him histories of kids that do approve on antibiotics alone so he can keep track of them too without those parents actually travelling to see him. As it was said on here before, is his sampling now become non representative of the whole PANDAS population because mainly those who need the "bigger guns" go to see him and not those who have improvement with antibiotics alone.

Edited July 20, 2010 by Vickie

[JAG10]

We are all part of the experiment, which is better than the current alternate-do nothing or psych meds that don't usually work. So, we are forced to be "okay" with that. But how do we get ANYONE to be the centralized tracker of some data here? Even Dr. Cunningham doesn't have a systematic questionnaire, but more "send us your child's history."

 

More certain answers are years away. There is so much bias by what each family has available to them in terms of location and financial resources. Those blessed with healthy financial resources may be obtaining a few different opinions, a few different tests, a few different trials. Each expert consult is about $500/hr, Cunningham and Igenex testing is $400-500 per test, per kid. Then there is the bias from the doctors side in terms of what they can legally and logistically provide without running themselves into the ground or being harassed by the prescription police.

 

Is Dr. Latimer the only expert that has all the options readily available to her? Can Dr. K or Dr. B order PEX when they feel it is appropriate? Has anyone recently had IVIG or PEX ordered//executed by Dr. T? Does Dr. Leckman currently order treatment? Is Diana P the only one attempting to keep centralized data?

 

Who knows what the big announcement will be, but it seems like the centralized conversation is the best news yet.

[thereishope]

JAG, I totally agree with everything you said.

 

Personally, one of my worries is those children whose parents do not have good financial resources. The idea of a child having to suffer because their parents honestly cannot afford the tests, the travelling, the procedures, it really bothers me. It's not always as "easy" as swallowing your pride and asking family members for a loan, taking out another mortagage, or making compromises. I suppose if you don't have that current or past experience of financial struggle, it is hard to grasp.

Edited July 20, 2010 by Vickie

[LNN]

Here's what I took away from the Pandas track - we are fortunate to have some very smart, very caring, experienced doctors willing to take risks and "buck guidelines" on behalf of our kids. They need our support. I bristled at a mass email that blasted -by name- a doctor who has put much time and research into this disease. But I also realized that each is making decisions based on their experiences and by nature of their practices, they are going to see different slivers of the whole picture. Have a hammer - you see nails everywhere. Have a wrench - you see bolts. Be a parent - you see a bunch of loose screws and parts that need fixing and need the whole tool box. In spite of having "experts" on board, we as parents still can't stop being the advocate, the case manager. We unfortunately don't get to quit that job even when we get to the believing doctors.

 

The great part is what Buster said in a different thread - they are all willing to come together and share ideas. They are not locking themselves in their offices and insisting they know it all. This is cutting edge and we are going to have to not endure, but participate in, advances in knowledge.

 

I'm with Kim. It's conferences, phone consultations with each other, research - that will help these doctors come closer together. Like us, they are using what they've experienced to make decisions. It's in their nature to want to say things with authority. That's what doctors are "supposed to" do. Give us the answers. I did not share complete agreement with 100% of what any doctor said. It didn't fit my personal experience. But we as parents need to keep sharing info and educating each other and our doctors. Change is happening and like TMom said - we have come so far. I really think we as a group can make a difference in small and big ways - we are an untapped power. We are all so used to being overwhelmed by this crap disease and being "victims" to it. But it feels like we ourselves are reaching "puberty" and growing up and coming into our own, discovering we have strengths and skills. We just need to figure out how to use it to make positive changes continue. Ideas welcomed.

[JAG10]

Okay. I think maybe I should let this thread rest,but now I need a copy of that blast:)

 

I am confused about the whole antibiotics alone cannot help some children long term (and I mean more than one sole child). IVIG cannot help a child alone long term if they contract strep. I'm confused. Even though I don't need Dr K right now, perhaps he needs to allow parents to provide him histories of kids that do approve on antibiotics alone so he can keep track of them too without those parents actually travelling to see him. As it was said on here before, is his sampling now become non representative of the whole PANDAS population because mainly those who need the "bigger guns" go to see him and not those who have improvement with antibiotics alone.

 

Perhaps that message will have been conveyed during this meeting they are wrapping up. I don't think Dr. K wants to or could possibly handle collecting data like that in a meaningful way. He's energetic, but older and basically a one-man show spread thin not only here in the US, but with commitments outside the US as well. I also think this group of docs being discussed does their best to keep costs as reasonable as possible given their level of expertise.

 

So many battles to fight: acceptance, insurance, funding, research, recruitment......

[thereishope]

I'm sure they are keeping their cost at a minimum. It's just plays in my mind how even that minimum is impossible for some. Perhaps, when I find energy and time (don't know when that will be), I will brainstorm ways to have a fund for those who cannot afford things like the Cunningham test or consults with specialists....

 

 

 

I also think this group of docs being discussed does their best to keep costs as reasonable as possible given their level of expertise.

 

So many battles to fight: acceptance, insurance, funding, research, recruitment......

[smartyjones]

The great part is what Buster said in a different thread - they are all willing to come together and share ideas. They are not locking themselves in their offices and insisting they know it all. This is cutting edge and we are going to have to not endure, but participate in, advances in knowledge.

 

I'm with Kim. It's conferences, phone consultations with each other, research - that will help these doctors come closer together. .

 

 

exactly! i did not like the way that e-mail seemed to mock that conference. i did not get the impression it was a session to convince the nay-sayers. i felt it was an sincere effort to share information. concerning that conference, i heard mentioned 'lyme, mycoplasma, varicella and other viruses'. i think this is huge since my son has since been diagnosed with lyme and other infections. i didn't feel what may come of it would simply be that pandas is real -- i felt it would/could be much more.

 

i think my son was incompletely diagnosed with pandas - he had classic symptoms, medical evidence. however, later he was diagnosed with lyme so i think pitand more accurately fits. what presented was pandas with much more under the surface. i was encouraged to think the experts are aware of these situations and that would be discussed in this meeting.

 

i guess we'll have to see but i was encouraged at the conference with the doctors and so appreciate having the opportunity to hear from them in person. THANK YOU to those who made that possible!! yes, there is not a uniform protocol of what to do but that there is movement in the right direction. it's it unfortunate that we are the ones at the forefront but with that there's also opportunity to affect changes.

Edited July 20, 2010 by smartyjones

[KaraM]

I feel the same way.

 

 

It's just plays in my mind how even that minimum is impossible for some. Perhaps, when I find energy and time (don't know when that will be), I will brainstorm ways to have a fund for those who cannot afford things like the Cunningham test or consults with specialists....