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A diagnosis after four long years: Common variable immunodeficiency (CVID)

Autumn as a “sick baby” in February 2012.

My daughter Autumn had been a “sick baby” from birth. We received diagnoses from asthma (which she does still have) to,”She is just a sick baby.” For four long years this is what we heard infection after infection, hospital stay after hospital stay, antibiotic after antibiotic. But I knew something was something more than asthma or that she is a “sick baby.”

During these four years, she was tested for everything from cancer to thyroid. They all came back normal. Finally, in September of 2011, we were sent to Dr. Rajeev Kishore for Autumn’s medication allergies. She is allergic to just about every antibiotic under the sun. Her doctor said zythromax was basically the only antibiotic she wasn’t allergic to, and even that wasn’t working like it should.

Autumn in October 2012.

Dr. Kishore started by running some tests. He checked for CF, but he said it could also be immunodeficiency. We had our sweat test in October and in November we got the news that the result was negative.

Autumn got a double ear infection and an infection in her lungs. Nothing was making it better. She was on three antibiotics in a three-week span when we got the news that her Ig levels were NOT where they should be. One week later we had an appointment with Dr. Nancy Wasserbauer Kingston. Four days after meeting her we started IVIG (intravenous immune globulin) and finally had a diagnoses. It was CVID (common variable immunodeficiency). This came just 13 days shy of Autumn turning 4. We will never forget this day as it changed our lives.

Autumn has had her first ever cold, something she had never had before. It always turned into something else. She has been able to go months between antibiotic treatments. Before we were happy to have a 10-day break between them. We now do sub-q treatments at home for her disease.

We could never thank Dr. Kishore and Wasserbaurer enough.

  • Pipsmom

    I could have written your daughters story as my sons!  His official diagnosis from Dr. Kishore is IgG Deficiency as well as asthma.  Dr. Kishore has forever changed our lives and we are eternally grateful for him!  

    My son has the same “Blueberry” (bear) that your daughter has.  He sleeps with it every night.

    Thank you for sharing your story.

    • http://www.facebook.com/kfeatheringill Krystle Featheringill

      Blu (our bear’s name) goes everywhere with Autumn now. He goes to all her appointments with all her doctors and she just loves him. It is such an amazing feeling knowing what is wrong and having a treatment plan.  I hope your son is doing well.

  • http://www.facebook.com/amy.l.langley Amy Lynne Langley

    Krystle, my daughter, age 2, has just been diagnosed with CVID and I have soo many questions. She too has asthma, frequent infections, antibiotic resistance, food allergies, eczema….we have just been out of hospital for 2 weeks with out last case of sinusitis. Im not sure how to or even if your ok with it) contact you directly. Email, facebook?

    There just isn’t much out there about toddler CVID. Thank you again for you time.

    Amy
    amyllangley@yahoo.com