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Status Updates posted by Iowadawn

  1. what is the LLMD that you mention from MN. Would like to know. We live in Iowa--losing our Iowa doc. THANKS! Dawn

  2. Yeah--the yucky sexual misconduct with a female patient is not going to go over well, especially with his past hx before the board. The added a bunch of "treating chronic Lyme" junk, that others say is the way they go after the docs. Using IV abx, not reporting lyme to state, CDC stds, record keeping...The behavior crap ticks me off. Trying to stay thru the end of the year. Then IL on...

  3. The program is at Meridell Achievement Center in Liberty Hill, TX. They have psychiatric programming and separate neuropsychiatric housing and programming. We have been told we can address the medical there. We have heap-big court/state issues. Check out their website. Right now we are haggling w/ insurance. We have ours; he will also have medicaid. We have serious/dangerous behaviors. Dawn

  4. Angie-

    I lost the last note I wrote. We have to put Evan in Orchard Place. What did Dr. T have to day or add to your PANDAS journey. Was going to fly out, but for a variety of reasons opted for the phone consult now. What might we expect in the consults? Great to hear the improvement with Joe. We have a more classical presenting (now 18) dd. 15 at the time. ASO's still up -me,her,Ev...

  5. IVIG a couple weeks ago. JUST saw your post when I logged in. Sorry for the delay in responding. Evan is back in the hospital after a dangerous incident this weekend. How is Joe?? Iwill write more at a better hour!!


  6. Good to see your post. How are you doing with the breast cancer? It has not been an easy ride here at all. I forget if you are going to Piccirillo as the LLMD. If not, whom, may I ask. There are a few of us old timer PANDAS parents around. Seems that most have turned out to be lyme. Ugh. We keep seeing rashes pop up and leave as we treat bart for nearly a year. PM when you can. Dawn

  7. How is Joe doing? We are post IVIG 5 weeks. We started trending more positive a about week three. Been here before so many times. School's out Thurs. Dawn

  8. Pandasmex-I perked up when I read that your son has been in Rogers. We went thru the screening. We were extremely disappointed--they said impulsivity/aggression was an issue and didn't believe Rogers was the place for him. He NEEDS intensive CBT. I would love to hear more about your Rogers experience if you feel comfortable sharing. Our 13 son is a PANDAS/Lyme . Dawn

  9. May I ask whom your LLMD is? We have the bart issues here, too.


  10. Deedee-

    Thank you for your reply on the forum. One question: What kind of treatment were they recommending for the anxiety for your girl, if I may ask. 150 lb 13yo son here.


  11. Angie-

    Just checking up on Joe?


  12. Hello-I am so interested in your visit to Dr. B. We see a LLMD who shadowed Dr. J. Our DS13 is a PANS/Lyme case. I have been really wondering if Dr. B would be helpful? We are able to get IVIG here in Iowa. What is he doing differently for you? How does long distance doctoring with him work? IVIG for your DS? Boy, would love learn more about your experience! Dawn

  13. I live in Huxley (south of Ames, north of Ankeny. Our son is a PANS/congenital Lyme & co. case. We see a Dr. Jeff Piccirillo in Grinnell. ILADS LLMD. Oh, I left a post. Was excited thinking you were in Iowa--nothing wrong with Minn! We saw Dr. Elliott. We abandoned Dr. Elliott. Got the PANDAS dx--no idea how to treat. Would not do IVIG. Did he still scoff at this tx?? PM me Dawn

  14. 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.


  15. 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

  16. 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

  17. 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...

  18. wilma-

    Did you get this! Ha Your dd sounds like our son in that all blank broke loose when we started going after the lyme. Have you tried any psych meds in addtion to abx? I wonder what NAmenda & Geodon have been a good mix. Namenda is often used with autistic kids with traits like our kids with very good results/very few side effects. A glutamate antagonist. Are you st...

  19. We live in Central IA just off I-35 near AMEs & DM (Huxley). Where do you live? We were able to have IVIG done at Mercy Infusion Center with Dr. P's script for IVIG. Our son is getting a high dose at 1.5g/kg--same as we got when we went to Chicago twice. We have settled into an 8 week interval. We fought & fought with BCBS, but ended up getting IVIG covered for a year. PM me. Dawn

  20. How are things? Evan is in school. This is the best "different"good we have had. Added colloidal silver spray. Had IVIG earlier this month. Best post IVIG yet. Also change in psych meds. Saying a prayer we are on to something. Just checking in. Dawn

  21. Is she revealing any new info or research results that would be new to us? The Pepsi grant money helped finance an immune cell researcher in Canada--anything new from this person? Dawn

  22. Feel free to email. I am awful at keeping track of everyone's case, too. hd IVIG this weekend again. He is on Geodon & Namenda again--most stability we have seen for quite some time. Abx's Augmentin, Biaxin & Rifampin just added colloidal silver spray to go after bartonella. It has been very rough since starting lyme tx 10/11.

    wandersen@huxcomm.net email any time...

  23. Have you seen Dr. Bransfield, yet? I REALLY want to know how your experience there. Our son is back in the hospital. How is all going for your daughter? I wish we weren't halfway across the US from him. Anxious to hear from you. Dawn

  24. Oh, my stars, Kimballot. I never picked up on how similar your 14 yo son's presentation & hx is to our 12 yo son. I read your IVIG update. We just did our 4th hd IVIG after he came home from the hospital (inpatient). He is a PANDAS/Lyme. ANyway, can I relate. Dawn

  25. Hello! I cleared my box a bit. Looking fwd to a new message from you! Dawn

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