Jump to content
ACN Latitudes Forums

Ellen

Members
  • Posts

    136
  • Joined

  • Last visited

Everything posted by Ellen

  1. T. Anna, thanks for asking about Gary. I haven't been on the forum in awhile. I also just saw your message and will PM you. Gary is doing a bit better and he is now in a place that we think could be very helpful. I will try to post a more detailed update on Gary some time soon.
  2. This is Gary's Mom. I am bumping this for those who didn't see it. Powpow, thanks so much for supporting Gary's photography business. He appreciated it very much. Some of the old timers here may remember the PANDAS website for kids that Gary created several years ago, when he was only 13. Gary has recently turned 18 and is still struggling with many impairments. His shutterfly photo and photo gift site has been another great creative outlet for him, so please consider supporting this business venture and spreading the word to others as well. We are approaching the holidays soon, and this would be a practical way for people on this forum to take care of some of those gifts and support a young adult with PANDAS at the same time. Feel free to PM me if you have any questions or would like an update on Gary. Ellen
  3. Hi, my name is Gary. I am Ellen's son. I have had PANDAS for seven years, and a five years ago I developed a PANDAS website for kids called Guide to PANDAS Syndrome. Now I have a business where I sell photos and photo gifts as merchandise. This has been a good creative outlet for me, especially since I love taking photos and sharing them with people. If you are interested in buying anything, here is the link. Please check it out and feel free to share this with friends and family through emails and/or facebook. The prices are reasonable, and there are photos from a variety of categories. I would really appreciate your spreading the word and supporting this venture. http://www.shutterfly.com/pro/007076833575/PhotoKing
  4. Brads Mom, our stories are similar and I would love to contact you and talk. My son is also 17 with schizophrenic symptoms, a history of frequent streps, lyme, ear infections, and he had a strep-triggered PANDAS onset at the age of 10. He is currently in the COS study at NIH, and we are working on getting the COS team and Dr. Swedo's team to collaborate on his case. When we last saw Dr. L 10 months ago, she felt our son was a candidate for IV Rituximab, but at the time, Georgetown had not yet established the protocol for these treatments. I'm glad to know that Dr. L has put that in place. My son has severe OCD with delusions and completely debilitating auditory hallucinations, paces constantly, and has not been able to function outside of a hospital setting for over two years. He is a non responder to all antipsychotics including Clozaril (used as a last resort for treatment-resistant schizophrenia), so we plan to connect with Dr. L some time soon to look into the Rituximab option again. He does have a positive CamK, and in the past we have had partial success with IVIG and plasmapheresis. Pow Pow has been a good resource for me, and I can connect you with others whose children have had IV Rituximab. I will message you with my contact info. I have not posted on this forum for a very long time, but your story has really hit home for me. Best of luck at Gerogetown. I hope we can talk soon. Ellen
×
×
  • Create New...