HELP. This question is not for my son, who has hypogam, but for my niece. I know this group is for people with CVID but many members also have lupus/fibro and my family is struggling to help my niece and am hopeful that many of you will have great ideas, suggestions, etc on where to turn. She has lupus which has affected her frontal lobe, short term memory loss, loss of time seizures. She has had it for 9 years and we recently had her placed in a rehabilitation hospital at the request of her current doctor to try to get a handle on her meds, get biofeadback, water therapy, etc. After a week it is a total bust and are taking her home. My sister is now at a loss of where to turn to seek a doctor willing to help with treating my niece. Her diagnosis include lupus of the brain, fibro, cerebritis vasculitis and others.
Thank you all for letting me share here and for any suggestions, referrals, recommendations.
Rachael Wager LaCross