How our lives have been touched by preeclampsia, cerebral palsy, epilepsy, feeding tubes, failure to thrive and whatever else comes our way
Friday, August 8, 2014
The Verdict
In case Anna didn't have enough to deal with she now has a few more things to add to her list of problems. She has Selective IgA Deficiency (SIGAD) and Specific Antibody Deficiency (SAD ). Her IgA has become virtually undetectable. She responded well to tetanus and diphtheria booster vaccines but not well to Pneumovax. She does not build antibodies to polysaccharide vaccines. Her immunologist feels this is evolving into something called Common Variable Immune Deficiency (CVID). The current plan (and I pray the final plan) from the immunologist is to put her on antibiotic daily from now on. She will also get a probiotic and 2 nasal sprays. He wants the Pulmonologist to add a steroid for her lungs. Hopefully this will decrease her number of infections. She also needs a CT of her chest. If she has 2 breakthrough infections while on the prophylactic antibiotic within a 6 month period and/or chronic lung damage on the CT then she will have to start infusions of immune globulin every 3 weeks for life. We pray the antibiotics work! Due to the IgA deficiency she will always be prone to catching every virus going around and it will make her sicker and last longer than for most. Our goal is to keep these viruses from turning into bacterial infections and hopefully the antibiotics will do that. Summer hasn't been too bad- when school starts back in 3 weeks it will be the true test. I know this post will require lots of googling. Sorry. I'm just too tired to explain.
Jellystone
We took our vacation this summer at a place called Jellystone. It was a great trip. We spent 5 days surrounded by a million different things to do and as an added bonus we met Yogi, BooBoo, and Cindy Bear. I'm not kidding, the possibilities for fun were endless. Here are just a few of the things we did. I really recommend www.northtexasjellystone.com if you are looking for a family friendly place to go. We rented a cabin and it was perfect. We can't wait to go back next summer!
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