Since the onset of his symptoms in March 2018, Luke has seen the following doctors due to infections or symptoms of the disorder:
2 Pediatricians
3 Neurologists
1 Cardiologist
1 Urologist
1 Physician specializing in Autism
1 Psychiatrist
1 ENT Physician
1 Audiologist
1 Dermatologist
1 Allergy Specialist
That's 13 Different Doctors in 3 states in 18 months. His medical file his been reviewed by The University of Arizona and Duke University. Luke's pediatrician and I believe that both organizations dismissed Luke because of his unusual history and various, additional special needs.
During this time, Luke has suffered from numerous strep infections, ear infections, sinus infections, two confirmed cases of the flu, skin infections, and viral infections. He had one observed grand mal seizure in August 2019. His condition has waxed and waned, but he has continued to deteriorate more and more as time goes by.
Luke has had more than 120 lab tests run in the last eighteen months, primarily blood tests, but also flu and strep swabs, urine cultures, stool tests, plus an EEG and CT scan. Think on that for a moment.
It first started out with the appearance of physical and vocal tics, as well as unexplained crying/kicking/screaming outbursts. However, during the last 18 months, Luke has experienced all of the symptoms (in some way or another) on this list, including: handwriting changes, sensitivity to light and sound, tics, anorexia, obsessions, hyperactivity, irritability, behavioral regression, urinary incontinence, aggression/rage, anxiety, and more.
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This condition is believed to affect approximately 1 in 200 children. I continue to share our family's story because I believe that Awareness=Diagnosis=Treatment.
Our kids at least deserve this much.
We are thankful for the opportunity to be evaluated by The Mayo Clinic in the near future. And we are humbled by those who have continued to pray for our family and for those who have donated to Luke's medical care. It truly takes a village and this journey is not yet over.
If you would like to read more about Luke's journey or to donate, please click here: Luke's story
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