I’m the single mother of two children, Karlee is my four-year old girl and she’s been showing symptoms many doctors have found difficult to name.
When Karlee was 1 1/2, we were out at a lake and she just… stopped breathing.
The doctor thought it was seizures. But this just didn’t seem to fit the entirety of her syndrome. She still was in and out of hospitals and never feeling completely well. A year later they thought she was might be struggling with Behcets in New York City.
I’m from Houston. I had traveled back and forth to Dallas as well and still no official diagnoses. I have been through trauma with family not believing me and calling Child Protective Services on me. I stumbled upon an autopsy of a dead uncle in the 70’s at age 17 and I was always told by several family members different stories. So I contacted my biological grandfather and learned that the uncle was in his custody when he passed and the autopsy was in my hand within an hour.
When I read it, my heart dropped. I knew the symptoms that his son had matched what my baby was experiencing. He had no idea Karlee was sick. I had the autopsy confirmed in Dallas and Houston genetics. Weeks ago, doctors down here finally woke up and the appointments were within a week and cardio found high pulse and the standing test where her pulse kept elevating and she finally kept still and described her hands and feet were cold and calves and feet got cold.
Her veins now appear as popping and badly dialated. Her pupils are always dilated. I have videos of her seizure like activity but they are not seizures. They recently studied her stool and found a parasite called Giardia that she was treated for. They said the parasite would not have caused anything else. I was scheduled with a certain neuro in Houston but that doctor is in the hospital himself.
I’m at my wits ends and that doctor was our last hope! I could write a book about the path we’ve been down for a diagnosis–this is just a summary. I hope this story can be shared and hope someone might recognize some similar symptoms and give us a clue where to look next.