My daughter has a complicated medical history. She is rare and unique. She is one of a kind and we love her. We love her so much. We want to help her when she is in pain or not well.
Society has taught us to go to the doctor when we are sick. We expect that they will know what is wrong and then be able to fix it. This is not the case when you are someone who is diagnosed with a rare medical condition.
Emily has so many different medical issues that it would take longer than one blog entry to list them all. She has been referred to many different specialists. The hope was to find answers. Many of her specialists wanted to find the one diagnosis that fit all her symptoms.
I'm no doctor, but I know enough to know that will never happen. Emily is too rare, complex, and unique. She has multiple symptoms all from different “systems” of her body.
To never get answers is hard and of no help. This is one of the biggest challenges in raising her. Another big challenge is two of her symptoms, yeast issues and chronic edema, that continue to persist.
We have tried many medications and tests to find a fix for her yeast issue. It can be so draining and confusing. With the help of her pediatrician, who can think “outside the box,” we were able to try different medications. Her doctor finally found one not typically used, but her chronic yeast issues are finally under control.
Her chronic edema is another story. No one has any ideas why she has this. Her pediatrician says her circulatory system is sick. We may never know why. This is so with many of her body systems. The edema can become painful and severe very quickly. Through trial and error, we have found things that help.
We make sure her fluid intake and out-take balance. We keep her legs and feet propped up. And sometimes we put her feet in a foot bath with Epson salt for a nice massage. Trial and error sometimes find the best solution.
Raising someone with rare conditions and complex disabilities can be somewhat of a challenge and very confusing. Sometimes the cause of symptoms may never be found. So relieving those symptoms becomes priority.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.