Hello everyone,

     I hope everyone is doing well and getting through the winter months.  Regarding the e-mail with the attachment, if I remember correctly last year this same person tried to email all of us and there was a virus attached to it.  Do not open it.  I can't believe someone would enter our website, which is a support group and try to infect our computers.  It takes all kinds.

     Moving on, Zach and I will be going to the NIH March 20th to the 25th.  This will be his 6 month visit after his first year.  He has been doing wonderfully on the Anakinra, without any progression of hearing or vision loss.  As a matter of fact , he had a hearing test this past Monday and his right ear showed improvement.  When they tested his left ear, which has not functioned for two years, he said he heard the first lowest pitch.  He has had two ear infections back to back and then complained abour his left ear really being painful, but this time no infection.  The ENT doctor thought since it radiated down from his ear possibly a type of arthritis might be developing.  I had a brainstorm and thought if he really did hear a beep in his left ear and he is having pain, but no infection could he possibly be getting regeneration of nerve tissue.  I called Scott at the NIH and left a message for him to ask Dr. Kim if their could be correlation between the ear pain and nerve tissue.  I have not heard back yet, I'll let everyone know, if there is something to report.  If anyone will be up at the NIH during the 20th of March week, let me know.  Zach and I have enjoyed meeting the various families so far.

 

Take Care,

Jan