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Everything posted by cynditk

  1. if night sweats, have you considered Lyme/babesia/bartonella? These infections also cause behavioral reactions such as rage, anxiety, depression, irritability, etc. Night sweats is not really a PANS symptom as far as I know.
  2. Please do not vaccinate any more. These kids have immune dysregulation which vaccination makes a lot worse. These are the kids who get the adverse reactions to vaccines, and it appears to be cumulative, every one impacts the immune system adversely and can set off a cascade of inflammation that is impossible to shut down. Cannabis greatly helps my son deal with Lyme symptoms, mostly pain. I don't think he would need it if it weren't for the chronic pain he lives with. Please find a local doctor who is PANS literate. I think there is a site- PANDAS network- that has a doctor's list. Bet
  3. Also, did you guys get insurance coverage for this? Do you know if they treat young adults-my son just tuned 21.
  4. Oh thanks for correcting me, I thought Rothman was an all day program! One hour a day for how many weeks?
  5. My son has had a PANS flare starting about a week ago, per high ASO titers (470) He is also in intensive treatment for Lyme, on IV antibiotics. He hasn't had a flare in a long while. I am wondering if DBT therapy geared toward anxiety might be helpful to him in dealing with the anxiety when it happens. He has a therapist who he is very close to and that has helped a lot. I know that the PANS has to get treated, but I'm wondering if the DBT might be helpful- I don't think ERP would help as he doesn't have much OCD, its generalized anxiety. I have thought about Rogers or Rothman, but I don't th
  6. Although PANS knowledgable, Dr.Plawner ended up passively dropping us as patients- would not follow through on what she said she would do and not returning phonecalls. I hope you have better luck than we did! DR.Hatha Gbedawo treats PANS, she is in Seattle and is a Naturopath. She is very good and I highly recommend her. She does not however prescribe IVIG.
  7. Hi Mike, Have you tried all the usual ways to decrease herxing- charcoal, baking soda/ epsom salt bath, apple citrus pectin, etc? Also, is medical marijuana legal in your state? Taking Ibuprofen and benadryl every 4-6 hours can also be helpful with IVIG, you should start them as soon as you begin your infusion and continue for 48-72 hours if the IVIG makes you herx a lot. Those are the things that work best for us.
  8. HI, I am just trying to understand the link between PANS and abx. If PANS is triggered by a virus and not a bacteria, abx wouldn't help, right? They might prevent a future infection, but they wouldn't treat a current flare if it was caused by virus, correct?
  9. Yes, actually, Dr.Lauren Plawner in Bothell is PANS friendly and treats with IVIG.
  10. Yes, perianal was the trigger for my son.
  11. I am interested in putting together a 3- 5 day retreat for young adults and teens with Lyme/PANS. I have been inspired by another mom on a Lyme forum- a Facebook group called Parents of Teens with Lyme- who put together this type of retreat for teens and young adults and it was wildly successful. Here is a link to the FB group: https://www.facebook.com/groups/630704753740290/?hc_location=ufi The retreat was originally designed for people with POTS and EDS and many of the kids saw the same doctor. Moms were at the retreat to supervise and I would do the same thing. A little about us: My s
  12. We see Dr.Kim Iler. We have a great Facebook Lyme support group. You can find us at Seattle Washington State Lyme support group.
  13. yes, i agree with above. Also you could try testing for perianal swab- my son never tested pos for throat but always pos on perianal. and they could run titers if open to that. but for practical purposes above would prob work. the rash sounds like it could be rheumatic fever- i would definitely treat!
  14. None of the PANS docs are covered by insurance? Sure you can't find one that is? Have you solicited recommendations for your area? Can you travel? Our doc is covered where we are. she is not a specialist but has educated herself and treats PANS.
  15. Following... my son has been on low dose steroids for several years to help control his PANS. No one has ever mentioned NS immunosupressant, but he is also immune compromised and on replacement immuno globulin.
  16. Hi Kristi, I would love to talk with you more about your experience with this neurologist, she is just down the street from us! I think we're going to make an apt because it would be good to have someone like this on our team and she sounds amazing...has she done any imaging on your son? Did you need Cunningham panel for her to treat? Is she working with the immunologist to determine protocol? Also interested in your experience with doc at Children's. Our experience has been with Gammunex, which my son has done well with for several years now. We have done hd and low dose both with t
  17. Hi Kristi, I notice you are in WA- who is your doctor? If you are planning for preventative dosing, does your child have immune deficiency? Thanks for your suggestions, I am going to take them to our doc.
  18. you have to live in stanford's service area to be treated by that clinic.
  19. With LD IG you would be treating the specific antibody deficiency/immune deficiency, not the PANS. My son has done LD IG for 8 years due to what started out as antibody deficiency, and seems to be progressing toward CVID. It is very important to treat this as if you don't your child will be open to getting more infections and triggering more PANS. My son has also done hd IVIG, and it seemed to slow the PANS down, but my son also has Lyme disease so he is constantly getting triggered. You can only get hd if its recommended for treating PANS, and it sounds like they are not recommending this.
  20. dcmom, did you pay out of pocket? How much did it cost? How did you get it recommended for your daughters? Thank you, Cyndi
  21. My son is 20 and has been sick for 8 years with PANS, Lyme/CO's, and immune deficiency. He has no real desire to become independent at this point and shows no initiative toward it. He has not graduated high school or GED. He is just standing still in time. He is still undergoing intensive treatments and I think he is waiting to get better before he starts his life. I think there is an all or nothing thought process at work where he thinks- I am sick so i won't do anything. When I am better I will do things for myself. What are other folks doing with young adults who are still very sick? W
  22. Neither of you guys mentioned Lyme/Co's. Can you give me a run down of how you were able to get to recovery? I know it would be a very long story- but the highlights/ treatments that you felt really made a difference. My son has been on IVIG for 8 years, 1 year of high dose with DR.B in CT, he is currently on IV abx for Lyme, and we had the PANS in remission until last month. But he is still not able to be out in the world functional. His pain, fatigue, and now with this flare anxiety prevent him. Thank you.
  23. Anyone dealing with all three who has had success? We get one under control then another pops up, its like playing whack a mole.
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