Kyra had her routine followup with her endocriologist on Friday. I left there just as confused as we were before we went in. Since April 22, her last visit, we have had to stress dose approximately 15 - 20 times, she has had an increase in her headaches, still craving ice cream, had a week ago something that looked like a red rash on half of her leg. So I went in with questions that needed answers. (Please don't take me wrong, her Endo is great with her and makes her responsible for her treatment.) Our answers, however, consisted of "I don't know why she is doing that, consult your primary care physician" and lab work of a low potassium to recheck in four weeks with a routine follow up with the Endo in October. I feel like we have found out what is wrong and why Kyra was so sick but that we are still beating our heads against a wall when it comes to the "little things" with this disease. Maybe I am just a frustrated mother. Afterall, I have read where so many cannot be out in the heat or even go outside and my daughter is fighting to stay active. With that being said,we have had to make some drastic changes in how we do the outside activities, providing more water and electrolytes, even pedialyte singles added to the water, the neurosports drinks, and us being more aware of what she is doing and drinking. Big picture still is that she is able to go and do and for that I am thankful!
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AuthorAngela, Kyra's mom. Archives
May 2016
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