We got some answers at the Mayo Clinic in Rochester, MN. They diagnosis Cherise with Ehlers Danlos Symdrome (EDS) a genetic disorder, that affect connective tissues, which are tissues that support the skin, bones, blood vessels, and other organs. Her Dysautonomia/postural orthostatic tachycardia syndrome (POTS) is a result of EDS. This probably also explains my older daughter's Chiari Malformation and scoliosis.
The Mayo Clinic was wonderful and understood we were self pay so they recommended the further testing of GI, respiratory and genetic to be done in California where our insurance can cover it. However, they recommend we come back for their Dysautonomia 3 week program, but it is $35,000. This program has had great success in improving the autonomic nervous system dysfunctions however out of budget, well almost anyone's budget.
EDS has no cure and treatment is only supportive. The Mayo Clinic recommended a diet and exercise program designed for her. We had 4 doctors brings up the mold in our home and recommended we try to change that for several reasons including she allergic to it.
We also learned growth hormone is a stress on the autonomic nervous system. The week before we left for Minnesota, she was having a lot of issues and that same week she grew Â½ inch. Mayo accessed those issues may be due to growth hormones in addition to low blood value. So the good news is"¦when she stops growing we will no longer have the growth stress on her autonomic nervous system. There are several stressors on the autonomic nervous system like; exercise, body position change, digestion, illness, body temperature change and more. We found that when she has more than one stressor at a time, her autonomic nervous system may malfunction. This knowledge gives us an understanding on how to keep her balance.
Presently, Cherise has been able to move her based line where she is out of the wheel chair more! Yeah! But she caught a bad cold after being home.
Our immediate goal:
"¢ Complete recommended GI testing
"¢ Rule out vascular EDS with genetic Dr.
"¢ See ENT Dr. for vocal cord dysfunction
"¢ Move! Where we have more sunlight, which is not only therapeutic, it will keep mold at arms bay.
"¢ Trade in my car for a mini van as it's easier to lift a wheel chair in to.
"¢ If it's in God plan to go back to Mayo Clinic this summer
"¢ Attend senior year at school.
We appreciate everyone support and prayers. God has placed so many amazing people in our lives that made such a difference. We are so grateful and thankful. God bless you all.
Mayo blood tests
Mayo Clinic awaiting shuttle
Mayo helping hands