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Posts posted by cynditk

  1. 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!


  2. 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!

  3. 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.

  4. 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.



    Cyndi Kershner

  5. 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!

  6. 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 this product. He has been on Gammaguard and Privigen also, but has done the best overall with Gammunex. My son has both PANS and immune deficiency, and when we did hd he had the same dx your doctor is using. Depending on his weight and how fast they run it the infusion will take 1-2 days, if he's 13 I would think more like 7-8 hours. My son had two 7 hour days when we did hd because he was about 150 lbs.


    let me know if I can answer anything else for you.



  7. 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.

  8. 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? What are your thoughts about what will happen with these kids if they don't recover? I am trying to imagine starting to plan for a future where he doesn't recover because its already been 8 years of intensive treatment and he is not recovered. We are applying for SSI this year but beyond that I am not sure how to plan for the future and how to begin the conversation about transitioning to some other kind of life.


    He sees a therapist twice a week and they are not working on these issues. He had suicidal ideation last fall so I think there is a fear of not rocking the boat too much or he will fall into depression again.


    What are some possible steps forward here?

  9. 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.

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