My co-lecture with Dr. T at AustismOne Conference

[Fixit]

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.

 

 

I would just like to add this conversatoin i had with Bat-S....

I think the problem is that we are limiting this Disease!!!!

the more i think about it the more i believe that the fact is the immune system is not fully developed until adulthoods and the younger you are the more suseptible you are to these microbes .....but what about people who get TS or OCD in adulthood.... their system was run down and they got this.....

I know of one guy who had tics as a kid.....fully recovered for about 8 years.....under the stress of becoming a dentist and opening a practice, he said he was really run down and got TS in his mid-late 20's.... He never put together the 2 things... and he's in his 40s now and doesn't really care about he correlation because he takes meds and has it under control?????

 

And if your son recovered from aspergers then maybe its his body was finally able to fight what ever was in his body

And i'm sure this has probably been hashed out here before...i just want to rethink/reinvestigate this...

And maybe it takes years to recover from ts/ocd and possibley autism etc because things like myco p take years to get rid of .....and as the body matures it is finally able to fight!!!

 

 

Bat-S

It seems to work. slowly, bouncing forwards, sometimes going a bit back, but the total is positive.

 

Fixit

Thanks for posting the SLOWLY part...i want it done yesterday, actually 10 months ago would have been better!!

 

And i understand the part abou the outsider thing.......we used to get strep all the time but now, neg strep-all tests.....sitting on the foul line of Cam k test....and it was the support of this site that helped me keep pushing and finding dr K and T to Myco P.....

I think it would help those on their journey to remember pitands....i know its just a word....but if its not included you really do start to feel like all of your other correlations to your childs illness may have been in your mind...

 

I have a new one PISTAND if someone didnt' say this already?/// Pediatric infection-strep triggered autoimmune neuro disorders.

we're pist over here!!!

 

Bat-S

It is not only the Strep I am not in agreement with, as the problem continues with the Pediatric too. Sandra got ill at 15. She was not very pediatric any longer and was sent directly to the adult neuro and not to the pediatric one. "Interestingly" both had no clue of the condition, dismissed the idea that the infection she just had had anything to do with the sudden outburst of the variety of symptoms. The adult neuro were adamant this had to be TS (although the required time has not passed and there were more points missing than present, and the pediatric neuro was ingeniously inventive and said that at 15 Sandra suddenly developed "Abrupt ASpberger", and dared saying that without shame or shaking of her voice.

 

Fixit

I still completely agree with you, age may just play into the part where you are more suseptible....what about people who get ocd or ts in their 20-30s...i would put money on an infection!!!!!

My other concern as well, and since i couldn't find the link to why my son was sick the day before onset , started giving me self doubt...My boy would be and i believe is currently diagnosed with TS....and that is a crime!!!

I AM THE ONE NOT ACCEPTING IF IT TICS ITS TS....IF IT TICS IT GOT SICK!!!!

 

None of this is an arguement...i and Bet don't want to be left out!!!!

[thereishope]

To clarify, my son did not receive an Asp diagnosis. I took him to the psychiatrist for residual OCD and because of all the disorders and problems that had surfaced, she said she had to screen him for it. He never received an Asperger's dx.

 

And if your son recovered from aspergers then maybe its his body was finally able to fight what ever was in his body

 

Also, PANDAS first surfaced on my son's 5th birthday. Prior to that day autism or Asperger's was never a concern. Besides having a speech disorder ,he reached all milestones, was fine socially, and no other disorders were present.

[LNN]

I want to put a little history into this discussion. Like I said last week, I didn't wake up one morning like Phineas and Ferb and say "hey, what do I want to do today? I know, I 'll speak at a conference about my son's mental illness."

 

Last October, a friend emailed me the night before Teri Arranga (Director of Autism one and host of an internet radio show) interviewed Beth Maloney. I wrote Teri an email and gave her some information about pex and IVIG because I don't agree with Beth's opinion that these treatments are too risky. That led to several conversations with Teri and she asked me to write an article about PANDAS and our story, which was published in January's edition of the Autism File. She asked if I'd be interested in speaking at the May conference so that parents and doctors who live in the autism world might learn more about PANDAS. I told her she should try to get a few doctors to speak, as that would paint a better picture. She invited Drs Swedo, Cunningham, Dr L and Dr K and they all accepted. She then asked if I'd co-present with Dr L so that a parent's personal story could illustrate what the doctors were saying (my son is "classic PANDAS with both tics and OCD and no rising titers, we have done pex, he has had remissions but not lasting and we are considering IVIG - so we're in the middle of the journey just like most here). Lynn called Teri a while after this to ask about registration info, since the AO website only said "coming soon." Teri and Lynn talked about Lauren and how she wasn't "classic' but had PANDAS nonetheless (diagnosed by several doctors who all agreed). Teri then asked if Lynn and Dr T would co-present on the non-classic side of things.

 

None of this was pre-planned. It evolved. The night I got my first email about the Maloney interview, Diana got the same email. At the time, she was focused on other things - equally if not more important. At the time, I was talking with her (and 7 other moms) about starting a non-profit. We had a few conference calls. Eventually, none of us could make the enormous commitment required. I felt I'd be better at smaller projects that didn't take me away from my two small kids. Others either needed to tend to sick kids or follow other ways to help 'the cause'.

 

Every day, we all have opportunities. We can tell our pharmacists, we can call our local NPR affiliates, we can contact Shelia Rogers, we can speak to our kids teachers...some days, we're up for the task. Others days are pull the blanket over your head days. I have enormous respect for Diana and Lynn and Beth Maloney and every parent who helps move this discussion forward, for every parent who "fishes" on other forums to find parents who are looking for help and whose kids may be mis-diagnosed. Each of us "saves" kids and educates our doctors as best we can. The one thing I would ask is that this not be turned into something where parents have to 'pick sides'. There is an enormous amount of work to be done. No one can do it alone. There is no "one' authority on autism. There will never be "one" authority on PANDAS.

 

If something helps my kids, I will see it as a good thing and support it as best I can. If something draws the conversation into the muck, it does nothing to help my kids and I will run far away. If there are "enemies" they are the voices that keep us from getting research and answers. We should avoid conversations that pit us against each other.

[laurenjohnsonsmom]

I would like to clarify a few things..

 

I was asking for parents to come forward and to participate in putting this lecture together so in the end it would cover the wider spectrum in how this disease manifests so differently from one child to the next. My goal was to collaborate so this would be about “all of our children of PANDAS”. This was NOT a plea to the fact that I didn't know what I was doing, or to please suggest another topic speaker. In the end, I think this

will turn out great and I want to thank the enormous number of parents who have already emailed with their support and suggestions on how to

make the biggest impact with this presentation.

 

I do not know if Diana P is speaking at this conference or any other for that matter. If she is, that's great. I am already committed to

co-lecturing with Dr. T. The more speakers we have the better. I believe there are quite a number of patents and doctors/researchers already speaking. That's my opinion only.

 

I'll be the first one to agree Diana has spent endless hours helping parents in person and through her website. She was not the first and I will not be the last person to spend endless hours in a day, seven days a week, in this battle to bring awareness and change to the face of PANDAS. Like I have said before, we are all in this “journey” together. We have the same “destination”, getting are children well. We might take different paths (different doctors), we might hit different or more road blocks than others (setbacks), and for some the journey will be longer than others BUT we need to support each other so we can make it to the end of the journey, some day. The same applies to how we are all trying to bring awareness and change, we have the same destination in mind. We are just taking different paths/approaches to get there. We should all support each others efforts.

 

I have personally had over 14,000 emails sent to me personally or through the today show since last November. I have replied to a couple thousand and I have personally spoken to at least 150 families affected by PANDAS (most who never have been on the forum, some who are here now). I'm guessing for ever one active PANDAS forum parent there are a thousand just observing what we post here. We started in the media trying to understand what was inflicting my daughter but ended up bringing hundreds of families along the journey in finding answers. For that I am grateful that this media attention will help many. It already has helped some return back to a functional place. That's really cool! Again, just my opinion!

 

I recently gathered with a group if PANDAS parents to put together a resource/organization to use our recent media exposure to best help all

our families. We spoke of a non-profit "group" to help fund Madeleine Cunninghams research and to educate the medical community so as

parents we could some day find help in our own back yards. Diana was included in these discussions and asked to participate. She was and is always welsome. She has, for now, decided to keep doing what she's doing with the families she's

working with already, separately from this mission. That's great! She has the right to make her own choices. She fills a need within this community but there are lots of needs to be filled with and "guess"timsted 500,000 children who are currently misdiagnosed or undiagnosed with PANDAS. Beth Maloney's organization fills another need and I respect what she's doing as well. There is room for us all and I am thrilled that in the end we all have the same common goal which is to help other people. No one has right to criticize that effort until you have walked a mile in our shoes (warning..wear comfortable shoes)!

 

This will be the first AND only time I will discuss what Diana (and/or Beth Maloney's or any other parent for that matter) is doing to help with the cause. I have concerns that a few may "ruin it for the rest of us" this if posts start getting deleted by moderators/administrators because we cannot respect and support each other. We need to keep this forum as a place for encouragement and support so EVERYONE feels welcome. Anything else can be discussed via PM We need to do this for our children's sake!

 

Lastly, I just ask that you realize that you realize how emotionally, physically and financially exhausting the last 5 months has been for my family. You all know what we are going through as you are or have gone through it, as well. Add on the non-stop media exposure and the numerous other projects that we are hoping will help all our children, soon and it is overwhelming, to say the least!

 

Since we just finished IVIG, my daughter and our family needs time to heal, which means that for the time being I might not be as active within this forum as I would like to be but I promise even if she completely recovers from this, I'm not going ANYWHERE until ALL our children are well. That is NOT my opinion but it is my promise!

 

A good friend recently told me (who happens to be one of my daughters wonderful doctors)..When God takes something from your grasp, He's not punishing you, but merely opening your hands to receive something better.. 'The will of God will never take you where the Grace of God will not protect you.' (I just wish he didn't have to make the ride sooooo long & bumpy)!

 

There comes a point in your life when you realize: Who matters, Who never did, Who won't anymore... And who always will. Don't worry about people from your past, there's a reason why they didn't make it into your future.. Always follow what's in your heart, it will lead the way!

 

Wishing you all "less bumps" in your road to recovery.

 

Lynn

[Fixit]

If something helps my kids, I will see it as a good thing and support it as best I can. If something draws the conversation into the muck, it does nothing to help my kids and I will run far away. If there are "enemies" they are the voices that keep us from getting research and answers. We should avoid conversations that pit us against each other.

 

Thanks for the back story.

I hope i didn't seem...counter, anti...can't think of the word...

That is the problem with emails...you cant' get the intent or influctuation.

I am so fully supportive of Vickie, i don't think i'm disagreeing with her....

It is that i don't want to be left behind becauses i may not be classic pandas/pitands...though i don't know if i know what that would be...

and i would feel terrible if anyone, who falls on the fringes, is left behind as the boat pulls away.

Once this gets recognized, i would like to volunteer as party coordinator at some major conference center and slam down some beverages with each and every one here!!!!

[laurenjohnsonsmom]

On the subject of the AutismOne conference. I did want to mention that Dr. Bouboulis will be there as well. I did a little "arm twisting" (actually didn't take that much twisting as he is so eager to connect the doctors together). He will not be presenting BUT will be taking part in the PANDAS think tank with the other physican's/researchers.

[Doug]

I am just so happy that all of the Doctors are talking

and ALL have one thing on there mind..our children

It would be nice to get them all together in one room

so they can get on the same page.

I know that more local doctors are in need of understanding

PANDAS and PITAND.. that is the big subject that needs to

be addressed.

And getting the insurence companys to except that what treatment

we as parents decide to do they need to pay for it,there are so many of us

that are going broke because we just can't get help to pay for anything.

Diana Pohlman has been our guideing light!

without her we would have been so lost.

My family has hope for everyone

our daughter has had ivig with Dr k 3 weeks ago

and we hold our breath EVERYDAY to see if it is going to be a good day.

Thanks

Tracie&Doug

and my daughter

Lauren

[laurenjohnsonsmom]

FIXIT,

 

You have my vote for "official party planner"!!!! BTW, the "boats" not going anywhere without you!

 

Once this gets recognized, i would like to volunteer as party coordinator at some major conference center and slam down some beverages with each and every one here!!!!

[Fixit]

With Misty Eyes...thank you..

that was like a warm hug!!

And i have been known to throw a great part!!!

I can get references on that!!

[wornoutmom]

Lynn and Laura:

 

Very well said! I for one, appreciate everything you both are doing and have done. Now if someone could get my son's case in front of the "think tank" as a way to problem solve and look at the intracacies of this darned thing, I would plan the party, host the party and break out the unlimited margaritas for all!!!!

 

-Rachel

[MomWithOCDSon]

Ditto!

 

I bet we could all co-host one heckuva party! Rachel has the margaritas; Fixit, what's your beverage of choice? I can make a mean vodka martini!

 

Lynn and Laura:

 

Very well said! I for one, appreciate everything you both are doing and have done. Now if someone could get my son's case in front of the "think tank" as a way to problem solve and look at the intracacies of this darned thing, I would plan the party, host the party and break out the unlimited margaritas for all!!!!

 

-Rachel

[Fixit]

Ditto!

 

I bet we could all co-host one heckuva party! Rachel has the margaritas; Fixit, what's your beverage of choice? I can make a mean vodka martini!

 

Lynn and Laura:

 

Very well said! I for one, appreciate everything you both are doing and have done. Now if someone could get my son's case in front of the "think tank" as a way to problem solve and look at the intracacies of this darned thing, I would plan the party, host the party and break out the unlimited margaritas for all!!!!

 

-Rachel

 

Vodka anything is good for me!!!! It looks like we have our Party Committee!!!!

[Sheila]

Hi Lynn,

 

I love the title of the session, on things not being black and white--that's perfect with the animal image, as you say--it will really help people remember the message. The concept of the "many faces" of PANDAS is so important.

 

That's a good idea, to have a slide show as you are planning, something to give a visual that the audience can really relate to. I hope members who are comfortable with going public can send you what you need.

 

I know you and Dr T will have plenty of information to convey during your one hour slot. Time goes so fast during presentations like this. I wish you both all the best with it. It should be a great conference, and I hope to be there.

 

I certainly hope Lauren is doing better every single day, Lynn. You know we're all rooting for her! Take it easy as best you can, and try to get caught up on your rest before the big event. Sheila

[sf_mom]

Go Lynn Go!!!!!!!!!!!! I just wanted to 'cheerlead' a little and thank you publicly for getting the word.

 

DP and I are going for a walk this morning (talk about other things than PANDAS hopefully as part of my recovery process) and I hope to convince her to attend the conference. I wasn't planning on attending but I now think it important to SHOW my vote of support to any and all individuals advancing PANDAS (hopefully I can convince my husband to watch all 3 kids). I want to be able to stand up, clap, cheer, yell and support those that have been willing to take the time like yourself to advance PANDAS. I want to give Dr. K a big fat kiss 'on the check'..... I will be forever grateful to him.

 

As you know, I prayed for an angel when my son got sick and I spoke to DP the very next day, she even gave me her son's Dr.'s appointment so my son could get a prescription for antibiotics..... she was my angel. She literally saved my son plus my twins from potentially a life of mental illness and misdiagnoses. I hope, if she does attend so I can get an opportunity to applaud her efforts just as I'll be cheering for those speaking!!!!!

 

EEEEEEEEEeeeeeeeeeeeeeeeeeeeeeeeeeeh, me yelling, cheering, jumping up and down for those DOING SOMETHING. Geez, and what about BUSTER, just a quick THANK YOU.... for all the valuable information you have provided to me and your help with me understanding it all! Millions more will be helped.

[thereishope]

Off topic, have any of you decided if you're getting together, doing ribbons, wearing photos to distinguish you as the "PANDAS parents"?

 

Wish I could be there with you guys! These darn bills keep me from going:)