CVID and PANS

[JenniferG]

Anyone dealing with a diagnosed Immune Deficiency and PANS/PANDAS?  What are you doing for treatment?

 

Thanks.

 

[Gpookie]

My kids have hypogammaglobulinemia.Long-term abx and LD IVIG.

[h_lee4]

Hello, I was diagnosed with a specific antibody deficiency (IgG) when I was 13, about five and a half years ago.  Have been on IgG infusions ever since.  Started out by doing Sub Q weekly but later switched to IVIG once a month. I started learning about PANDAS/PANS about a year ago after my health took a rapid decline, but I believe I have had soft symptoms since I was about 13.  I also have Lyme disease.  I'm not sure if this is helpful, I am still trying to figure out how this all ties together.. If you have any insight regarding the combo of immune deficiency and PANS/PANDAS please let me know!

Also, just a note.  I used to do fine after my IVIG infusions, only effect was exhaustion right after and maybe a headache the next day, however, after my health took a serious decline and my PANS became full blown, I started having adverse responses to the treatments with severe PANS symptoms the day after IVIG.  I believe I have an infection that is triggering the PANS and hopefully once I get rid of it I won't have these bad responses to IVIG anymore!  I also believe that my IVIG may have been a factor in keeping PANS in control all of those years.. possibly.

[teechamp]

Just received the genetic testing that shows a variant related to CVID.  currently has diagnosis of autism/PANDAS-PANS/ OCD/ Anxiety / rages/ so hoping this CVID will get IVIG in place .  

[JenniferG]

Wow!!  Could you tell me what gene?  Did you do 23andme?