Search the Community
Showing results for tags 'cvid'.
Found 1 result
Hi everyone, My 9 year old DS has been treated for the past 2+ years at Stanford Children's Hospital for CVID and PANS, and by another local MD for congenital tick-borne infections (ehrlichia, babesia, and borrelia - aka Lyme). After monthly rounds of IVIG 'maintenance' doses for the past 2+ years to treat CVID and 5+ years of antibiotics to treat the tick infections, he's improved overall but had new symptoms appear that led me to ask Dr Theinemman at Stanford to consider plasmapheresis for my son during our appointment today. Those symptoms include: - self injurious behavior and aggression towards me (jumping on me and pulling me by my hair when upset/raging) - severe OCD to the point of being life threatening (obsession with public restrooms and flushing toilets - he'll race across busy streets if he sees a Starbucks where he knows there's an easily accessible bathroom, run into strangers' houses to get into their bathrooms, etc.) - severely restricted eating (no protein since sometime in late 2015) Dr Theinneman is 'on the fence' about plasmapheresis for him due to some of his underlying infections potentially still being active and causing inflammation. She is going to discuss with Dr. Frankovich and call me in a couple of days with a decision. My questions for you are this: - if your child has undergone plasmapheresis, did s/he have an active/underlying infection at the time? Did s/he also have CVID? - what was your child's response to the pheresis? If s/he improved, how long did it take to notice improvement? - if your child got worse, what symptoms got worse, and did s/he return to baseline after a period of time? - if your child got worse after the pheresis, did you pursue any other treatment options? What were they? What was the outcome? Lastly, a huge thank you for all of the prior postings on this topic! They have been very helpful :-) And, thanks in advance to those who will (hopefully) respond to this post of mine; my appreciation of the dedicated, exhausted parents and concern for their precious children cannot be adequately expressed in a post