We have only been in this marathon for 2 years - one year pre-diagnosis when my poor kids was told he was crazy and health with therapy, psych meds and CBT that did not really help because it was just not being done well if you ask means another year of being treated by a PANDAS doc.
Since being diagnosed we have tried lots of things and the rages and constant obsession with suicide seem to have passed (for now) but he is still crippled: unable to leave the house, dress, or interact with anyone other then his sister, my husband, and I.
We considered Rogers last year when we were extremely concerned we just couldn't keep him safe at home. The Miami program wouldn't take him and referred us to the residential program in Wisconsin. We never went - but only because I honestly couldn't figure out how to get him there. We have since gotten at appointment at the Rothman Center but I have had to postpone three times because again, I cannot figure out how to get him there. We are in a much better place now and I am hoping that as we continue to see slow incremental improvements I will find a way.
So my question to house of you who have done Rothman and or Rogers is whether we should try again for the Rogers Center in Florida with Sr. Storch since it is more intensive. They wouldn't' take him last year because he was just too sick - but he is better now so maybe a 4 hours program would be better than the 1 hour at Rothman. Or, maybe given how hard it is to get him to go anywhere, one hour is all he would be able to handle.
His deal is that he hates and distrusts all doctors (he has been down a pretty rough road), he has debilitating OCD and is terrified of leaving the house, extreme sensory issues - noise - talking, chewing, ticking clocks all drive him crazy, smell issues - very sensitive to smells and gags frequently, can't stand the feeling of clothes on his body so really refuses to wear anything but underwear, on and on. When we try to take him to appointments we really need to weigh whether it is worth the risk - he will jump out of moving cars bite scratch, punch, spit anything he can do to prevent you from takiing him in. Once he is there - he is self conscious enough with strangers usually that he cooperates - but the second he is alone in the room with my husband or I he goes nuts.
When we leave him alone and don't make him do things he is afraid of - he is sweet and cooperative.
Does anyone have experience or thoughts on this? Hee had rituxin a few months ago and I am seeing some improvements I am hoping it will get us well enough to convince him to try this - so assuming we do get him to go - I want to do everything I can to make it to the right program. I feel like I have one shot at this and if it goes wrong we will have a of a time trying anything else.
My son had Plasmapheresis in early May. Since then the rages and violence have subsided - but still flare up if we try to make him go anywhere - like a doctors appointment. Now he does everything by Skype and basically does not leave the basement. It is not clear to us whether he is calmer because of the plasmapheresis or because we just don't make him do anything - he just sits in the basement playing video games, has not showered or brushed teeth in ages, doesn't leave the basement at all. He he is still very depressed and suicidal, and has anxiety though the roof, but he used to plead with me daily or hourly to let him die and that has decreased to the point that it is pretty rare. It only crops up when he thinks of school - which he has not been to since January and which we have given up on making him go to this month. Dr. L is now recommending Rituxin/Rituximab. We are scheduled for a Georgetown consult on Monday.
I am nervous because I have heard that it could make him flare up again - the way they do with IVIG, before starting to get better about 8 weeks after the last treatment. It has only been three and a half months since the plasmapheresis and some people say that can take longer - like 5 - 6 months. I am wondering if we should be waiting a little bit to so the Rituxin - especially if it could cause a flare up which I am not sure I have the stamina for right now.
At the same time - if Rituxin is unlikely to make things worse even temporarily and could get him better faster, I can deal with forcing him to the hospital (that will not be easy).
We have been told little to nothing about what to expect.
Has anyone had experience with Rituxin/Rituximab? Thoughts on waiting or going ahead with this right away?
