TeenGirl became seriously and mysteriously ill over the summer. She has spent about 8 weeks as an inpatient at Doernbecher Children’s Hospital since July 5, 2007.
The reason, you ask? Wish we knew.
There have been many theories. The first was TSS (Toxic Shock Syndrome). Not so strange for a 14 year old girl. Not so scary either… we thought, if that’s it, give her some medicine and get her home. It wasn’t TSS. That would have been too simple.
TeenGirl has an entire team of Medical Professionals stumped. No one can figure out what is wrong with her. She looks auto-immune, but she doesn’t test positive. Interesting.
Symptoms? Lots of ’em.
Headaches which occurred with more frequency over a couple of months, irregular (and close together) menses, lethargy, sinus congestion, generalized depression/ neuological decline, fevers, elevated white blood cell count, severe anemia, fainting spells. Later on she developed a rash over her entire body- a skin biopsy didn’t show anything abnormal.
On her first admittance to the hospital, she was given 5 units of blood products to counter-act the anemia, by now she has had so many units of blood products, I have lost count. She had kidney failure which took weeks to correct. There have been specialists of every kind involved in her care, tests on her blood, biopsies of her bone marrow, kidneys and skin, a spinal tap. You name it, she was tested for it. Cancer, although an intial concern, was ruled out early on. She didn’t “present” like a kid with Cancer. I had to laugh at that… evidently, she didn’t “present” like anything. Now, 5 months after her initial hospilization, she is out of immediate danger, but we still have NO answers. What caused this to begin with? How will we stop it? She is currently having APHERESIS (a treatment that replaces the plasma in her blood with donor plasma) and taking some many medications it makes our heads spin. The most recent medication addition is CellCept. She is also on steroids which has caused ugly fat deposits all over her face and upper back, they also make her cheeks permanently pink and often leave her feeling ill. I have days when I wonder if the medications aren’t keeping her sick! Maybe we should stop them all and see how she does before we go onto a new, more aggressive treatment. (Now they are talking about a Chemotherapy often used for Lupus patients). The Doctors are sure she has Lupus, and will one day test positive for it.
TeenGirl started her freshman year in High School in September. She misses more school than she is there for. Lucky for us, she is on a medical 504 which allows her to take half her classes online and doesn’t hold her absences against her. We make the 1 hour drive each way to the Children’s Hospital at least once a week, although it’s often 3 times in one week. Now, we are beyond searching for an answer. Maybe we won’t ever know what disease this is. As long as its under control, I can accept that. Really. I can.