Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

Posts posted by Iowadawn

  1. I haven't read through all the posts, but you are NOT nuts! I have heard several anecdotal reports of the flumist vaccine causing PANS reactions. I guess it would fall under PANS other environmental triggers. This vaccine is nasty because it is a live vaccine, as I understand it. I am sorry you had to find this forum, but glad you did so quickly. Run, don't walk to get an appropriate assessment.

  2. I haven't read through all the posts. I do agree with the first one--vigilance is a must. There is a reason the "nit-picking" saying came to be! I really think the lice shampoo was about a waste of time. My sister did lots of conditioner on her son--he would go to bed with it on in a bonnet and then rinse it out. He seemed to get cleared quite quickly. I became an expert at picking through every inch of two of my kids' scalp. Night after night. I would swear I had found the very last nit --and dang!! Evidence of another. Hopefully, your daughter won't get them. It was a few weeks out of our lives I don't want to do again. Glad we kept at it!!

  3. We used to live in Omaha. This is good to hear. Does one have to be on the BT campus as a resident to be seen at the BT's Hospital. There are so few that get it out here in the middle of the US. We need some top people to make the rounds at the medical programs in Des Moines & Omaha. Diana P thinks that once the IVIG study is published it will be easier to make that happen.


    What came of your visit? What led you to Boy's Town, if I may ask.



  4. Just curious if the dose you got was the 1.5g/Kg or the amount (I believe) Dr. Swedo is using at NIMH--2.0g/Kg. Correct me if I am wrong. I pray one time does it. So many have a hard time getting insurance coverage after one or are broke after one and can not return to get another. In our case insurance covered several, but we still had underlying infections that needed to be dealt with so the results would start disappearing after about 8 weeks of improvement. The PANDAS IVIG study can't get done & published soon enough so our kids can get treatment right away. Blessings & prayers. Dawn

  5. Ditto on accommodations with plane boarding, etc. We did this with our son and he was able to pre-board or be in the very first group. We had a letter from his doc, but the boarding people didn't need it, they just marked him down as needing to board first.



    Whatever it takes to get her there. Crocs--don't even let it register on your Problem-O-Meter. Boy, if there is one thing this ugly disease has taught me: Perspective. Best Wishes. Dawn

  • Create New...