Monday, September 13, 2010

Invisible, but not alone

In earlier posts, I've mentioned the invisible illness that haunts me daily. I'm thankful that it is relatively mild, but the associated conditions that may develop in later years frighten me. Knowing that its not myself that faces it, but my daughter deeply saddens me.
My daughter was initially diagnosed with Selective IgA Deficiency days after her first birthday, and was recently reconfirmed. We were concerned because our healthy baby girl dropped in weight from the 50th percentile to the 3rd, while simultaneously developing a chronic cough and mucousy diarrhea. My first fears were of Cystic Fibrosis and Celiac. It was during the testing for Celiac, that we discovered my daughter has no IgA.
Hers is a fairly common primary immunodeficiency disease. Thankfully, her symptoms are pretty mild. She is still prone to a chronic cough. Her weight is starting to come up, as long as she avoids certain foods. She primarily has a food allergy to dairy, casein to be more specific. Dairy allergy is a common occurence in people who have Selective IgA Deficiency.
Exposure to casein results in days of diarrhea. Unfortunately, many people don't realize hidden sources of dairy and casein. Most people can accept that she can't eat cheese, but don't realize that she also reacts to soy cheese. In child care settings, she's constantly being exposed to these hidden sources. The diarrhea has made it very difficult to potty train her. Its hard for a child to learn to use the toilet when their belly hurts and they cannot control their bowels.
I worry about the future for my daughter.  Will she catch a virus at school thats benign to everyone else, but more threatening to her? Will she develop autoimmune disorders? Systemic Lupus Erythematosis is already present in the family. Will she develop asthma? If she ever needs a transfusion, will she go into anaphylaxis? Then there's the fear that she will go on to develop a more severe combined immunodeficiency.
For now I simply try to be a good mother. I treat my daughter like any other child. I make clear to caregivers that she cannot have dairy/casein. I remain patient with the potty training, and hope that one day her diet will be free from hidden casein. I feed her a good diet and make sure she lives an active life. I let her be the wonderful vivacious child that she is.
I share our story with you so you might realize that there are many of us who live daily with invisible diseases. Even happy seemingly healthy pre-schoolers can be effected. I hope that this will serve as a reminder to parents, please don't send sick children to school/child care. Remember, one of your children's classmates may have an immune deficiency.
I welcome comments by others who face an invisible disease. I hope that another parent in a similar situation will read this post and find companionship. If you are facing an immune deficiency disease, please visit the Immune Deficiency Foundation to get more information.
For more information about dealing with invisible diseases please visit, Remember, you are not alone.
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