Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
So, first of all I am KICKING myself because I got my friend to watch my daughter so I could attend the "autoimmunity connection" seminar and MISSED IT! I was an hour off, so I'm hoping Mark can fill us in on that one (He hasn't found me yet, actually no one has and I stood up for like 15 minutes this morning hoping someone would recognize me). Here are some bullet points from Dr. Charlotte Cunningham-Rundles:
First thing - funny - 2 docs couldn't agree - Dr. CR said CVID is always genetic and Dr. Ochs says he thinks it can be acquired.
Knowing which abnormal gene it is is important because:
It helps in making the correct dx
You can get genetic counseling
Gets you the correct treatment
e-health records launches on IDF in July (yay)
Pneumonia is greatly reduced by IVIG - it is highly unlikely you will ever have it again once you start treatment (if you are getting the proper treatment). The lower your trough levels are the higher your chances of pneumonia are
Autoimmune disease - if its an antibody test - REMIND your docs that it could be a false negative because we don't make antibodies very well AND it would be a false positive because of the IgG we get from everyone!!!! Doctors can not diagnose an autoimmune from blood work!
Ports - she brought this up twice - No need for a port - she says its only a matter of time before they give trouble and she would rather not see them in the immunocompromised - do subq instead (if you have reasons for not getting an IV)
Only 10% of patients have affected family members and most cases this relative has IgA deficiency ONLY.
Pregnant women can receive IVIG - just adjust the dose as weight changes.
People with CVID have radiosensitivity - doesn't recommend ct scans EVEN once per year.
Doesn't recommend gene testing (see note "only 10% of family members have cvid)
SED rate or CRP increases are not from CVID - you have another inflammatory disease in the works - keep digging
Bronchectasis cannot get better but it can get static
Anyone diagnosed under the age of 6 was probably misdiagnosed - the immune system is not fully developed and is still growing. She doesn't feel comfortable dx cvid until age 7 or 8.
I did record it as well just not sure how to get it off my recorder and you have to be able to turn it up loud to hear it...i'll work on it when I get home:)
More to come!
First thing - funny - 2 docs couldn't agree - Dr. CR said CVID is always genetic and Dr. Ochs says he thinks it can be acquired.
Knowing which abnormal gene it is is important because:
It helps in making the correct dx
You can get genetic counseling
Gets you the correct treatment
e-health records launches on IDF in July (yay)
Pneumonia is greatly reduced by IVIG - it is highly unlikely you will ever have it again once you start treatment (if you are getting the proper treatment). The lower your trough levels are the higher your chances of pneumonia are
Autoimmune disease - if its an antibody test - REMIND your docs that it could be a false negative because we don't make antibodies very well AND it would be a false positive because of the IgG we get from everyone!!!! Doctors can not diagnose an autoimmune from blood work!
Ports - she brought this up twice - No need for a port - she says its only a matter of time before they give trouble and she would rather not see them in the immunocompromised - do subq instead (if you have reasons for not getting an IV)
Only 10% of patients have affected family members and most cases this relative has IgA deficiency ONLY.
Pregnant women can receive IVIG - just adjust the dose as weight changes.
People with CVID have radiosensitivity - doesn't recommend ct scans EVEN once per year.
Doesn't recommend gene testing (see note "only 10% of family members have cvid)
SED rate or CRP increases are not from CVID - you have another inflammatory disease in the works - keep digging
Bronchectasis cannot get better but it can get static
Anyone diagnosed under the age of 6 was probably misdiagnosed - the immune system is not fully developed and is still growing. She doesn't feel comfortable dx cvid until age 7 or 8.
I did record it as well just not sure how to get it off my recorder and you have to be able to turn it up loud to hear it...i'll work on it when I get home:)
More to come!
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
big hugs to you!
Tina - I have complete laryngitis lol so luckily only one person has talked to me and that was at the dinner last night. Still sore throat, no fever and just tired. So glad I came. Can see where having a buddy here would be a really good thing.