*The following story was shared with us by Kendall's mom, Ginger
It was November 2010 and our lives changed forever. Kendall was a healthy, vibrant six year old. The Friday before Thanksgiving was a normal school day with after school ballet. We stopped for dinner on the way home. Everything was perfect until we went to bed.
Kendall woke up with a tummy ache and vomiting. No big deal….she must have a tummy bug. Lots of Gatorade to keep her hydrated to no avail. The vomiting continued throughout the night. I phoned the on call doctor that informed me to give this bug 24 hours to subside. Indeed it must be a tummy bug. By noon, Kendall was getting worse and was becoming incoherent.
I immediately scooped Kendall into my arms and rushed to the closest Children’s Hospital in Fort Worth, TX. Within seconds of our arrival Kendall began having grand mal seizures. The Emergency Room doctor was amazing and diligently worked on Kendall. Her blood sugar was 26 and she was quickly crashing.
After many hours in the Emergency Room trying to stabilize Kendall, she was admitted into the Intensive Care Unit where she would stay for the next two weeks. Kendall was in septic shock and that night was the worst night of our lives. Our Pediatrician was notified and we were told that our little Princess would not live through the night.
Two weeks of living in the hospital and the Endocrinologist on staff was trying to discharge Kendall home. He informed us that insurance would not continue to cover her expenses when he could not find anything wrong. I knew if I walked out of that hospital with my little girl that she was going to die at home.
I immediately phoned Kendall’s pediatrician at home and begged her for help. This angel of a doctor helped me advocate and it saved my little girl’s life.
Our journey to diagnosis started when we fought back against our daughter being discharged from the hospital with no answers to why she was so sick. With our Pediatrician’s help we demanded more testing. This meant threatening the Endocrinologist’s license. We told him that if we were kicked out of that hospital we would see that he never practiced again.
The Endocrinologist angrily continued testing and lo and behold a pineal gland cyst was found on Kendall’s pituitary. That cyst prompted more testing and a stim test was done. Kendall had no reaction to the stim test. She failed the test miserably.
The Endocrinologist diagnosed Kendall with Adrenal Insufficiency at that time. The next year was very difficult for our family as we struggled to adapt to our “new normal.” We now had a child with a life-threatening illness and we spent so much time in the hospital figuring out how to live with this disease. Our once bubbly little girl lived in fear now. She never knew when she would be admitted or for how long.
The biggest challenges we faced was Kendall not being able to return to school for first and second grade and finding an Endocrinologist that knew what he was doing. Kendall is an outgoing little girl that loved school. She excelled in school and was in the gifted program. She suddenly found herself isolated from peers and was getting home-schooled. Kendall’s immune system was weak and she couldn’t really go out in public for the first couple of years. Any illness immediately got her admitted to the Children’s Hospital.
We are currently traveling six hours, one way, every six months to a Children’s Hospital in Houston, TX. Kendall is much more stable and we love her doctors. Without advocating for our daughter, we would have lost her to the incompetence of an Endocrinologist that couldn’t find answers. Kendall is starting high school this year and has learned so much about her body and advocating for herself. She is doing much better medically speaking.
My tips and advice for other parents of children with adrenal insufficiency is to never give up. Do not be afraid to advocate for your child. Find a support group that can answer your questions any time of the day or night.
*You may reach Ginger Wetter at firstname.lastname@example.org