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Everything 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 do remember that higher fat content is best for absorption. With a full meal, if my memory serves me right or the absorption is cut in half.
  3. If you want a thorough explanation of how amantadine works go to www.Meridell.com and look under treatment philosophies. Our PANDAS son14 is recently returned from this facility and is on amantadine and BuSpar.
  4. 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!!
  5. Our son was nearly 14 with his T & A. PANDAS/Lyme (3B's) and chronic. At this point, 8 months post T & A we do not regret it, and probably wish we had done it sooner. Ours is a complex case, so it is difficult at this time to say how much the T & A is responsible for improvements, though.
  6. The babesia FISH test was the test we were soooo very grateful we ran.
  7. Gees, it can hang out in the hip area like it did to a gal in our church--has nearly cost her her leg. I think I would be inquiring, at least. my two cents.
  8. 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. Dawn
  9. I will admit I haven't read through all the posts. Our boy failed miserably on ssri's. Two different ones. Just this spring BuSpar was added for anxiety. Non-addictive, in a class by itself, so to speak. Older. May want to inquire about this one. Dawn
  10. 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
  11. I like Philamom's suggestion on the Advance Lab Bb culture. Dawn
  12. I apologize I haven't read through the entire thread--I just want to say to RUN, don't walk to PANDAS doc. This stuff can start looking chronic and then it is a booger. There doesn't get to be a pattern of real exacerbations. More like bad/ really bad/ less bad. Get thoroughly checked over. Best Wishes. Dawn
  13. They aren't ping ponging a bug (exposure is all that is sometimes necessary) with others in the house--a carrier of sometime?
  14. It has been helpful for our son's frontal lobe dysfunction.
  15. I have also read somewhere at some time that the PANDAS- type tics don't necessarily stay the same as they come & go. Tourettes supposedlt has a more consistent type of tic(s) for the kid once he has it. Boy, we have certainly had the morphing tics here over the years. Jump in if this is way off. Dawn
  16. Just curious about how well (if at all) insurance is covering if you have had this done and have had your insurance process it. Thanks. Dawn
  17. Ifran--I think your box is full. I tried to PM you 2x. Dawn
  18. For those who are interested I will PM you the website that explains in great detail the use of amantadine for frontal lobe issues. It is written by a neuropsychiatrist at the place our son currently is getting help in Texas. Our ds14 was started on this in January. It has been helpful. Dawn
  19. Hello--Our PANDAS/Lyme ds14 is a patient at Meridell in NW suburban Austin. We live in Iowa. I wouldn't mind learning about your group and docs in area. We fly south monthly. Dawn
  20. 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
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