Ellen got a reaction from Hrosenkrantz in Update From Ellen's Son
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.
Ellen got a reaction from philamom in Update From Ellen's Son
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 reacted to PowPow in Update From Ellen's Son
Gary, it wonderful to hear from you. My daughters' were on your kids website and found it very helpful. One daughter made a friend through it and was able to share her PANDAS experience with someone who knew what she was going through. That website was really a blessing to her, at the time- she was 11 or 12 and PANDAS (as you know) really stole so much of her childhood. She watched severe PANS happen to her sister, and then one year later, it struck her. The website gave her a place where she did not feel alone. Thank you so much for that.
You are clearly a very talented photographer! I especially like the bridge photos, they are really beautiful. I will definitely share your link and will support your business.
Keep us updated on your business and again, Gary, thanks for what you offered my kids through your website! It is an honor to hear from you on the forum.
Ellen reacted to momofadult in desperately sick/starting Rituximab infusions - what to expect?
I have been away from the board for awhile. I guess I was feeling downhearted about my son not getting better and discouraged over the inexperience of docs in treating his condition; yet, I stopped by tonight and saw this topic. I am amazed at the varied presentations of PANS and am heartbroken over how many children and families suffer intensely from this autoimmune condition. This board is comprised of an incredibly strong and resilient group of dedicated families who persist through the challenges associated with getting their children's health back. My son has been diagnosed with autism since age 2, (he is 27 now) but became suddenty and acutely ill overnight in June 2010. His PANS care has been a bit fractured but he has received prednisone orally (he improved until it was discontinued), IVIG (no improvement), and very many PEX treatments (no significant changes). He has had an extensive work-up genetically, biochemically, and microbally with various abnormalites that are not definitive for any one condition other than cerebral folate deficiency for which he takes leucovorin. He was "PANS Likely" on the Cunningham panel. Dr. T. refers to him as "PANS plus". We are still waiting to start the rituximab therapy that his local neurologist recommended. Its been several months since it was recommended, but he is falliing through the cracks in the system. I think my fears about rituximab and not hearing of any personal experiences has allowed inertia to set in. This is really not like me. The encouraging stories here inspire me to get back in the saddle again. My son's major symptoms are a movement disorder that now also severely affects his eyes. The other common symptoms of PANS are there too.
I would love to meet with Dr. Francovich since we live here in northern california, but whenever I have called Stanford for PANS help, I get turned away when I mention my son's age. I was unavoidably out of town for the northern california PANS conference and missed her and all the updates. Does anyone know how the summaries of the presentations can be accessed?
Any connections with other families who have had experience with PANS would be greatly appreciated.
Ellen got a reaction from momofadult in desperately sick/starting Rituximab infusions - what to expect?
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 reacted to dcmom in desperately sick/starting Rituximab infusions - what to expect?
Ellen- my thoughts are always with you and your son. Sending you a PM.
Ellen reacted to PowPow in desperately sick/starting Rituximab infusions - what to expect?
Ellen , so glad you responded here! I was thinking of trying to connect you when I read bradsmom's post.
I will send my contact info to you also, bradsmom.