Jump to content
ACN Latitudes Forums

4SK

Members
  • Posts

    1
  • Joined

  • Last visited

  • Days Won

    1

Everything posted by 4SK

  1. We have been working with Dr. Gbedawo since last summer and respect her wisdom, she is passionate and helpful. That said, she can't do IVIG but referred us to Dr. Plawner who has treated with IVIG and does recognize PANS as a legitimate dx. She has a kind demeanor but my child felt pressured-as she wanted to talk to her with us out of the room. Compliant child agreed, did a great job sharing but blew up once in the car. In hindsight if one knows PANDAS/PANS kids have separation anxiety then why expect it or even suggest they separate from parent? (Because she questioned if my daughter had it? Maybe but was costly to daughter) I pushed my kid too which causes more stress but we all wanted help so we were willing to do whatever (despite how hard it was for my daughter to have me leave). My kids tire of seeing doctors and not get better, new pills new docs and so I wasn't surprised when my daughter refused to go back. I do think Dr. Plawner would be a good choice and she is one of the helpful willing ones who are learning about and treating PANS, which is so needed in this Puget Sound area. Nearly a year prior to Dr. G we did a phone consult with Dr. K and he dx and of course suggested we do IVIG. A few months later we met with Dr. Vlcek (11/2015) he was at Seattle Swedish. To be extremely blunt- see Plawner instead! At that time he clearly hadn't read or didn't embrace the PANDAS/PANS dx criteria/white paper. He didn't even do a neurological exam on my child and when I received the chart notes he didn't have the history correct; not even the correct referring physician. This is my first post here but I read it often, it has helped me accept that I am not crazy though I can make excuses..."it was a scary story" 8yr olds don't suddenly stop sleeping alone because of a scary story/movie. I wanted to post and just offer caution about Dr. V. if your child is like mine getting them out of the house can be such a chore. I would do a phone consult first and ask him what he knows about inflammatory brain disease (PANS), if and how he treats it. To his credit he did want us to do the Cunningham panel. We did the panel with Dr. G and it has been very informative, the lab will answer any questions you have, they are great! I wish we would have done it earlier but didn't have the money, though insurance actually covered some of the cost. We are now working exclusively with Dr. Gbedawo, Dr. Trifiletti and psychiatrist Dr. Johnson (who was the first to suggest PANDAS- a life savor!). We opted to see Dr. T for a few specific reasons instead of returning to Plawner. Mostly because we felt we needed someone with lots of experience who could also do IVIG if deemed necessary. We were blown away by his insight, he knows these kids and the horror the families are living in very well, those that are textbook cases and those that are not. He and Moleculara explained a similar interpretation to the Cunningham panel results identifying one of my childs as being a more chronic state. I might also research on here about doing the vaccine test/vaccines. I have learned a lot through parents posts. Feel free to PM me if you have any questions, I am just starting to network support. Having two PANS kids and traumatized non-PANS kids under one roof doesn't leave a lot of time for support but boy is it needed! Just reading missionmamas post on this thread has been encouraging to me!
×
×
  • Create New...