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Old 02-21-2013, 04:10 PM   #4
Join Date: Feb 2008
Posts: 8,397
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Re: Anyone with a child with an immunodeficiency disorder?

I am not dealing with the exact same thing, but I definitely do understand the concerns with secondary infections, etc. My almost 7yo has Nephrotic Syndrome caused by an autoimmune reaction. He is almost always on immunosuppressant therapy which can be so scary when he gets sick. He was diagnosed when he was 3 and at that point every single little cold that went through our household resulted in him having pneumonia and being close to hospitalization. It has been really hard to not be overprotective of him now that he is older and school age. We homeschool, but he is still involved in the community and I can't keep him in a bubble of course. We just try to do the best we can in terms of providing a really healthy diet and getting care for him ASAP if he is getting sick. We've done all the celiac testing, tried high dose allergy meds (he has mild allergies), etc. to see if we can't get his immune system from being so overactive all the time. Unfortunately every time he even gets a sniffle, he flares again and gets really ill from his body attacking his kidneys.

It is can be really hard to find support since people don't always understand what you are going through with your child. Sometimes they think you are just being way overcautious with trying to protect them from illness. Sometimes you blame yourself that maybe you should be doing something different or have made different choices. It can feel very isolating that people don't really understand because your child looks "normal". Just know you aren't alone even if our children aren't suffering from the same illness. Feel free to send me a PM if you ever need to talk
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