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My co-lecture with Dr. T at AustismOne Conference


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So….I am trying to prepare for the AutismOne conference and Dr. T and my presentation will be, "Not so Black and White: The Many Faces of PANDAS"

 

The black and white is a pun on the bear. The theme of the talk is that PANDAS is not just tics and/or OCD and positive throat cultures but can be weird things like repetitive sneezing; you've got to think outside the box. Dr. T will cover the “medical side”, I will touch on the human impact.

 

I REALLY want to emphasize the broad spectrum that this terrible disease manifests in ALL of our children differently. I was thinking of doing a slide show of sorts (candid pictures of our children) with some sort of association i.e.: maybe a caption of how long they have been suffering, or a quote from mom or dad (if you could say one thing what would it be?), or your child's main symptom(s). Wanting to emphasize in a very creative fashion as many families/children as possible, no identities involved. Food for thought. Comments and suggestions appreciated.

 

It’s soooo frustrating that no matter how long I do an interview within the media, no matter how much I talk about PANDAS and the wide spectrum of symptoms occur within these children, how sick some of these children are, I have NO control what the “end result”, the 3 minutes or less that ends up on the television. One good reason I am grateful for this conference opportunity, to have some control of the end result.

 

If you are interested in helping. Please email me at laurensneezing@gmail.com

 

I know my presence here isn’t what it used to be but I have been putting in long hours working on getting our daughter well and also have been working with some of the wonderful parents here on the forum along with our brilliant doctor(s) on a couple of pretty large projects that will hopefully help us all navigate through this disease easier than we have in the past. Wish us luck! We will need it (and tons of help, too), soon!

 

People are listening; I truly feel we will see some big advancement in awareness and research soon.

 

I am forever appreciative to my friends here on the forum.

 

Lynn

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Hi Peglem,

 

Sorry, we have been traveling "cross country" for IVIG. Lauren did well with IVIG. Really BAD headaches between day one and two. Moderate leg cramps (flu like aches) but for the most part, she was a trooper! We are doing well post-ivig but are carefully monitoring her. I know this will be successful for her (to the point where we can lessen if not elimate the current manifestation and get her back to a functional place). Dr. K say's it takes 2-3 weeks to see real results, especially with the older children (Lauren is almost 13).

 

I cannot say enough about how brilliant and compassionate Dr. B has been to us.

 

Thank you for asking...

 

 

Lynn

 

Thank you for doing this!

But, please could we have an update on Lauren?

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First, speak from your heart along with giving facts. What did you want? Ideas of what to include? Pics? Concise personal stories to choose from?I don't want to start giving suggestions where it is not needed.

 

 

If you give pics or personal stories, do make sure there is a sampling of different symptoms, onset, ways to recovery, and those who are still searching. It would be great if someone who had low titers and a PANDAS dx and recovery could supply a pic or story.

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I think that it's important to not forget the less subtle cases. Lauren is a cases of not so subtle pandas. Those are the cases that get the attention but there are so many children suffering with less sensationalized versions of this that just aren't newsworthy... it's easy to forget these children.

 

 

I hope that the IVIG proves to be the cure for Lauren.

 

 

 

First, speak from your heart along with giving facts. What did you want? Ideas of what to include? Pics? Concise personal stories to choose from?I don't want to start giving suggestions where it is not needed.

 

 

If you give pics or personal stories, do make sure there is a sampling of different symptoms, onset, ways to recovery, and those who are still searching. It would be great if someone who had low titers and a PANDAS dx and recovery could supply a pic or story.

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It would be great if you could co-speak with Diana Pohlman, since she actually has a recovered child, has and is followed/following more than 300 families over the course of two years, put the PANDASNetwork website up, flown all over the country to meet with most of the leading treating physicians to guide, inform and consort with others, and has helped so many of us during her own personal life story. It would be so gracious of you to broaden the message with someone who has actually been "around the block" so-to-speak with all this. You could hit it from the "more socially acceptable" side, like what we are seeing on TV, and she could hit it from the less "pretty" side, which hits a home-run for so many of us. Why reinvent the wheel when she's already had it rolling? Just my 2 cents. Hope Lauren continues to get well.

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I couldn't agree more with Coco and her suggestion on having Diana P co-speak, considering that she has helped so many on this forum and supplied so much informative and useful information from her experience as well as a connection to the doctors who are familiar with Pandas. The website "Pandasnetwork" has been very helpful to so many.

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I ditto that.... how awesome it would be to have a first hand source.

 

 

I couldn't agree more with Coco and her suggestion on having Diana P co-speak, considering that she has helped so many on this forum and supplied so much informative and useful information from her experience as well as a connection to the doctors who are familiar with Pandas. The website "Pandasnetwork" has been very helpful to so many.
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Just to clarify . . .

 

The AutismOne Conference is set, and the speakers' panel and agenda has been set for several weeks now. A link to the conference web site is below.

 

AutismOne Speakers Schedule

 

Lynn and Dr. T. have been asked to share a segment, so Lynn already has a "co-speaker," and it seems unlikely that it is up to her to set the speakers' list or adjust it at this point in time.

 

I know Diana P. has been an invaluable resource to many here; she was one of the first people on the forum to PM me and welcome me when I first arrived, and the pandasnetwork site is a great resource, too. But if Diana wanted an opportunity to speak at this particular conference, then wouldn't she have sought it for herself? Or perhaps one of Diana's ACN forum friends should contact her and encourage her to seek a way to participate?

 

IMHO, it is very generous of Lynn to post here offering to include some stories, information, thoughts from us here. In minding the old axiom that one shouldn't "look a gift horse in the mouth," I'm feeling grateful for this opportunity as it stands. I'd be happy to see Diana P. have a similar opportunity to be heard, as well, but that shouldn't diminish Lynn and Dr. T.'s contributions.

 

Just my 2 cents worth . . .

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It would be great if you could co-speak with Diana Pohlman, since she actually has a recovered child, has and is followed/following more than 300 families over the course of two years, put the PANDASNetwork website up, flown all over the country to meet with most of the leading treating physicians to guide, inform and consort with others, and has helped so many of us during her own personal life story. It would be so gracious of you to broaden the message with someone who has actually been "around the block" so-to-speak with all this. You could hit it from the "more socially acceptable" side, like what we are seeing on TV, and she could hit it from the less "pretty" side, which hits a home-run for so many of us. Why reinvent the wheel when she's already had it rolling? Just my 2 cents. Hope Lauren continues to get well.

 

I agree that Diana is the one who has already put in 'long hours' of work and compiled all the information, offered support and guidance and hope to so many parents, and I think many here can attest to her knowledge and sincerity, not to mention that the PANDASnetwork.org was started by her and other parents from the PANDAS forum. You have spoken with her I assume?

 

So I guess what is meant by the the 'human aspect', would be emphasis on the more severe cases those with symtoms on the far end of the spectrum?, and the impact it has on the family along with their struggles to find help and answers for thier child? might be good to tote along a parent who has been thru all that. :)

 

Oh, and could you tell us why you opted to travel 'across country' to do IVIG and not with Dr. B.? did you say back a ways that you were to see Dr. Latimer regarding PEX, didn't you say Dr. B. recommended that? I gather that you are having your Today show is documenting your dx and treatment for a later story?

 

Well good luck!

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Lynn, I'm glad you are doing what you can to put/keep PANDAS in the public eye. Diana may be a good resource for PANDAS stories since they are already collected there. I'm not sure Allie's story would work since nobody is really very sure (except her pediatrician and I) that she has PANDAS...or what. We're still sorting stuff out. Thank you for offering to bring our children and stories with you to the conference to show the whole spectrum- I think you'll find the autism community very receptive!

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I think we have a good representation at this conference. Laura is very well versed in PANDAS and she will represent us as informed parents. Lynn may be recognized and that makes people feel that they can trust her and feel safe. Lynn has always popped back on here to get feedback and I think it is amazing she is turning to us prior to her appearance for words of wisdom and guidance.

 

They can only have so many parents speaking.

 

What I worry about is that no matter what these two say, they realistically can't please everyone. It's very hard within a cerain timeframe to paint everyone's picture. I hope we all remember that. Let's not jump on them afterwards otherwise parents may become hesitant to speak.

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You know what would be interesting, to do an informal poll on here how many of us were either told our kids might have autism or Asperger's (by dr, school, etc), how many of us had to get our kids screened for it, and how many who already have an official dx of PANDAS have a child who also carries the autism label. The conference would find that very interesting. Just state it was an informal poll and one lump question, maybe for kids 7 and under? Realistically a person whose PANDAS surfaced at 13 wouldn't be screened for autism if there were no concerns before. And make sure there's a box that says " No one ever mentioned autism".

 

My son had to be screened for Aspergers's because of everything that surfaced. No one would the think of screening him now since he is recovered.

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Lynn,

 

Thank you for doing this! I would be willing to help. I have 4 children with PANDAS and their symptoms manifest very differently. This may be good to point out that even with siblings, PANDAS can manifest in diffrent ways. I will email you.

 

One thing I am really hoping gets discussed, but this would probably be Dr. T's portion, is that physicians have an understanding that strep is not black and white. They are taught that if you have strep you will have a rise in strep antibodies, so they rule out PANDAS based on this. I know so many children who go to their pediatrician b/c their parents are pretty sure they have strep, they get a negative rapid test and are told it is only viral. They go back to school with strep that was not detected and a week later, half the class has strep. Anyway, I just wish/hope this would get cleared up.

 

Colleen

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