My son is newly diagnosed CVID and has received IVIGx 3, so far.My question is, he ( and his siblings) have been "sickly" since birth- numerous hospitalizations for pneumonia, otitis, etc and, now at 16, he finally gets a diagnosis from the allergist (new doc) after the first appointment. Yes, she had his med history and she ordered blood work, but we had had all of this and more done when he was a toddler. Is it normal to "not" have CVID appear until older? If it is genetic, shouldn't it have shown up the first time 13 years ago? Thanks for educating me.

I was first diagnosed at age 25 after being ill since the age of 17. The latest IDF survey showed the AVERAGE time froe onset of symtems to diagnosis to be over 9 years.

My grandaughter had all the typical symptoms from birth but was not diagnosed until she was 6 by her Ear,Nose and Throat doctor who send her to duPont Childrens Hospital to an Epidemiologist who further tested and confirmed CVID.She's been getting IVIG twice a month since. According to all information I've gotten, they don't know if it is genetic. Shelbie is the only one in the family with it.

I’m the only one in my family with CVID or any type of compromised immune system. I’m a 30 year old male and was diagnosed at the age of 6 and have been receiving IVIG treatments ever since. I currently receive 30 grams every three weeks via IV. Just from personal experience and knowledge, I think it is key to be diagnosed early and start the IVIG therapy immediately. Its unfortunate that people are diagnosed at an old age given the number of infections and illnesses they have suffered. Most documentation in regards to the life expectancy of a person with CVID is based on the age of diagnosis and initiation treatment. Chronic sicknesses and infections can take a toll on person’s organs. On the genetic issue, in my 25 years of treating for CVID, I‘ve never really been given a definite answer on whether the disease is genetic or not. There has been discussion in regards to the X gene but I was told that mine was not genetic but I don’t think anyone knows for sure. Long story, I think anyone would tell you that the key is an early diagnosis and IVIG therapy to minimize infections. I would stay persistent with your physician and ensure that he/she is performing the adequate tests to confirm the diagnosis. Josh

I am 49 years old, diagnosed with CVID 6 months ago. As a child I had infections (upper respiratory), pneumonia, ear infections, every thing you can think of. It wasn't until I started having GI problems this past year that I was diagnosed. Be very thankful that someone looked at your son's file relatively early in his life and that he can now have treatments and avoid the numerous infections that I had as a child. He'll be much happier after he has treatments. Thank goodness for a sharp doctor who diagnosed it early. Congratulations!

Young children have a tendency to have a lot of URI's. Unfortunately, not all physicians can think outside the box or of their specialty. If they don't know what it is then they reduce it to what they know. Better late than never. I encourage parents to question, pursue, and change doctors when they feel they are not getting what they feel they need.