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Iowadawn

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Everything posted by Iowadawn

  1. Iowadawn
    Why are the parents so unbelievably quiet. One father stated that the neurologist their girl saw wouldn't tell them a dx. These girls could be getting help. There are comment sections following new stories. I have left a few in hopes that the girls will get some real help. The national news should be all over this. I'm sure they have been hushed. IF this is PANS caused by vaccines--man would that ever blow open a Pandora's Box!!! This wreaks!! I hope these "officials'" bottoms are getting warm and they start having problems sitting still. Dawn Hey where's the Canary Party. They should be all over this. (It's a real organization.)
  2. Iowadawn
    )
  3. Iowadawn
    The health officials said it was not infectious, wasn't environmental--like mold, about four total things it wasn't. About the only things not mentioned was vaccines. Don't know. Dawn
  4. Iowadawn
    Thank you all. We have the doc who has written the orders, but I think the insurance co. is going to give us a heck of a time for more after our year of approval, without "labs" to backup the request. We pushed REALLY hard last time and BCBS said any additional would need labs. Any ideas. Dawn
  5. Iowadawn
    I smell a cover-up. The "officials" say that there is a dx, but one of the parents say the docs won't tell them what is causing this in their daughter's dx. I've read the HPV is implicated. One reporter said my email suggesting PANS was not the first. This is soooo fishy. MHO. Dawn
  6. Iowadawn
    Hi all! To those who have seen Dr. B, particularly my friends in PANDAS/Lyme. What kind of immune system problems has he found? Is he doing IVIG for these patients. Dose? Can/has he gotten approval for IVIG if you live out of state & then have you been able to get it done back in your state with a willing doc at your end? Scratching our heads here. Maybe these are redundant questions. Any other info? You can PM me if you want. Dawn
  7. Iowadawn
    Maybe we should sign something and send it to Dr. Swedo saying we want it named Swedo Syndrome! Or something! These docs know their past positions are TOAST and they are about to be toast if they don't try to save face. CANS Childhood--define childhood Acute---so what. Acute what? Neuropsychiatric--OK, they got one right. Symptoms--How can a dx be called symptoms. That's idiotic. How arrogant & pompous that they would put saving their names above helping our kids. They know they have lost. What will make me realllly angry is if Swedo et. al appears in a picture with these dudes in some article entitled: "We Believe in PANS--Now let's all get along." OK, I feel better. Dawn
  8. Iowadawn
    Keep in mind that the titers rise a few weeks after the actual strep infection--ASO first, then Anti-DNase B. The titers could be high at the time of a strep culture or rapid if they didn't get a chance to recede following earlier infections. Dawn
  9. Iowadawn
    They now have the entire extensive program for the meeting available online. It appears that the average Joe is not able to attend unless you were to go as a guest. Costs a pretty penny, too!! Dawn
  10. Iowadawn
    Hi all. Just passing this along that Swedo & company will be at the PAS conference in May 2012 in effort to have the 500 docs (pediatricians)help define/help come up with better dx criteria for PANS. You can google the site and also find the "formal" purpose, and who will be there presenting all laid out on a separate page . Maybe someone can put up the links---I'll self destruct trying!!! Personally, I think the whole "CANS" think is a bunch of trash and a cover---"See, see, everyone....PANS, CANS,.. we never have been that far apart...OK, We can believe in PANS." I'll refrain from further comment!! Errr! Dawn
  11. Iowadawn

    Checking in. How did the IVIG go? Quiet, peace Christmas Eve & Day here this year. Hope the same was true for you. PM when you can.

    Dawn

  12. Iowadawn
    mtmom- I PM'd you a name & number. Dawn
  13. Iowadawn

    Hello.

    The name of a LLMD in the Chicago (Lake in the Hills) area is Dr. Jeff Piccirillo. He is in CHicago every other week. We see him at his Grinnell, IA office. His number is224-678-9006. Has spent some time under Dr. Jones. ILADS trained. Let me know if you need anything else. Dawn

  14. Iowadawn

    You should be OK. They will pre-medicate with benedryl. Ask if he has the ability to handle a possible reaction. I hope you get enough improvement to go back to the insurance to justify more if needed. When are you doing it?? This is great. Dawn

  15. Iowadawn
    Same exact thing here with our ds12 and our LLMD's take on it. Dawn
  16. Iowadawn
    Perhaps this is in the other replies I haven't taken the time to read. Swedo is replicating the IVIG study that was done in 1999? and included 29 kids. The criteria is tightened up, I would assume, to minimize variables and muddy the results. The results then were great except with the tic cases. Again, they are tightening the criteria. Yes, they want to shut the naysayers up once & for all. For those who have joined the forum in recent months the whole PANS thing is also a way for the naysayers to save face. "Oh, I didn't believe in PANDAS, but PANS I believe in." From a doc who is in the know. I believe it will be very hard for the insurance companies to put up a fuss after, what I assume, will be definitive results. Dawn
  17. Iowadawn
    You have very fortunate to have a doctor sending you to Dr. B. GO! The onset isn't always this "one moment he was OK, and the next he wasn't." Obviously, something changed. I am so glad you are getting referred to one of the PANDAS specialist. Dawn
  18. Iowadawn
    SSRI's, which I think Luvox is had dastardly effects of disinhibition!!! We tried Lexapro & Zoloft. I noticed they (researchers) emphasized the mantra of "Go low and Slow" with these kids at recent conference. I wonder if that would have made a difference with our son. So many drugs have had paradoxical effects, that I doubt it. Dawn
  19. Iowadawn
    Ditto to the encouragement to seek out a PANDAS specialist. Run, don't walk so you can get to the bottom of your son's symptoms. Psych meds can have paradoxical side-effects on these kids. Finding one(s) that works can be a crapshoot. It has been for us. I think clonidine never was a winner for us. Hop on the phone tomorrow! Encouragement sent your way! Dawn
  20. Iowadawn
    The reporter emailed back and said that many had mentioned this and that he felt the health officials were looking into it. Slowly, the word is getting out. Just thought I'd let you know. Dawn
  21. Iowadawn
    The reporting of this starting in late October. I just sent an email to a reporter who had done a story asking if he could relay some info to the parents and directed him to the pandasnetwork.org website, so he could be enlightened. They do not appear to be getting anywhere and a variety of docs and professionals have been contacted. I want to scream to get these girls some help. One spoke that she woke up from a nap and started ticcing!! Dawn
  22. Iowadawn
    I saw a comment posted after an article I googled suggesting to find out if the girls had had the Gardisil vaccinations? Worth checking, I would think.
  23. Iowadawn

    HT-

    We did 2 IVIG's with Dr. K for our son. Also have had our other dd's to him. Utmost respect for him. Curious of his take on TBI's now. We found out about the lyme after the spiral after IVIG #2. I'm convinced we have always fallen in the PITAND group. He said himself all PANDAS is PITAND. He was not open to lyme, though. Just curious if he is changing his thinking...

  24. Iowadawn
    Love those biome diaramas!! Our pandas/lyme ds12 6th grader, who had a VERY fragmented last 2 1/2yrs of school completed a polar diarama this year! Your story gives me continued hope, Laure.
  25. Iowadawn
    Namenda is often rxed for autistic symptoms. The response to it is pretty darn good. It has a very low side effect profile. I can attest to that. It helps with cognitive function, focus, aggression,irritablity, OCD traits, eye contact, etc. Google WOI-TV5 and search for Namenda. A station here in Iowa did a lead story & then a follow-up story on it back in Feb or so. The doc in the second story is the one we see. Evan is on a much higher dose than Melanie's boy. I believe it has taken the edge off his problematic sxs while we try to get him well. It is a glutamate antagonist. Geodon is an atypical antipsychotic. It's main purpose for him is to address aggression/irritability. It is the one drug that has helped with his sleep. It helps the REM sleep. Risperdal made his sleep worse b/c it jerks around with the REM sleep. The only drawback is that it HAS to be taken with food/meal or the absorption is about 50%. Namenda could be a very good place to start for your girl. PM me if you need more details. dawn
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