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cynditk last won the day on March 30 2015

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  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. Beth Maloney's site Saving Sammy also has one I think. Specialists are fine but you also need someone you can see regularly. Most PANS kids are on prophylactic abx. Some have had success with various forms of alternative treatments. High dose IVIG has worked for some also. Every kid is different and you will need to try different things and see what works for yours. Also some respond well to ERT at places like Rothman, usually once the infections are being addressed. Welcome and best of luck to you! Cyndi
  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 think he would be able to get through a daily intensive program with the fatigue and pain he experiences with Lyme. His attention span/ability to concentrate is about 1-1.5 hours. Thanks for any feedback!
  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 son Lucas is now 20. He has been sick for 8 years, has been dx with (in this order)- CVID/immune deficiency, PANS, Lyme/CO's. He was housebound for 4 years, in intensive treatment for 2 and slowly improving and now getting back out into the community. I used to be a yoga teacher/therapist and recently retired to take care of him full time. We live in greater Seattle and have a team of docs working with us. My son is very extroverted and the thing that has been hardest for him has been the isolation of this illness. He has many connections online, but few in person. I think this is the case for so many of our kids. wouldn't it be great if we could put together a 3-5 day retreat so they could hang out together? I have experience planning retreats and based on the other parents' feedback I think I could put something together at a local retreat center that would be financially reasonable. Anyone else interested? Also please spread the word to other people you think might be interested. best, Cyndi Kershner
  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.
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