Olivia's medical expenses fund

My name is John Acker and I am the dad of a wonderful teenage daughter Olivia. Olivia is, and has been struggling with a terrible disorder called PANDAS for almost seven years. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. In simple terms a child with this disorder will get a strep infection, and after beating the strep bacteria the child's antibodies continue to be produced and lacking strep bacteria to fight, they turn on the child. These antibodies attack a portion of the brain known as the basal ganglia creating a multitude of symptoms.
The onset of symptoms for this disorder are quite often dramatic and sudden. For Olivia this happened in the timespan of an hour. After having gone upstairs to bed she came back down to her mother and me crying telling us that something was wrong. Thinking that she had had a nightmare we asked her to try to go back to sleep. She insisted that we needed to take her to the hospital because something was wrong with her. (This is a ten year old girl) Trying to explain the seriousness of a hospital visit we said they may draw blood and do tests thinking that the idea of needles would change her mind. She told us to call her pediatrician and take her to the hospital. This was seven years ago.

So what does PANDAS do? The symptoms vary, but extreme OCD and/or tourettes style tics are common. Olivia became obsessed with the idea that if she fell asleep she would not wake up. At ten she began staying awake for days on end sleeping only when her body gave out. Upon waking up she knew logically that she slept and woke up, but the OCD would not let her mind grasp the logic and not sleeping for days became a cycle. This disorder also causes depression and severe anxiety. Olivia has anxiety attacks so severe that she has been hospitalized more than once. The last trip to the hospital broke my heart as I had to call for an ambulance to take her. Her tics were so severe that I was concerned she may accidently hurt herself and I could not get her into my car. (just a note here, if you call 911 the police show up too. Having 4 police officers, multiple cars, an ambulance etc, does not help extreme anxiety.) Other symptoms include mood changes, emotional instability, sleep distubances, fine motor skill changes, joint pain, and seperation anxiety to the point of following family members from room to room. 
Many cases are mild and the kids only show some of the symptoms that I've listed. After beating the strep infections and with a little time, symptoms will subside. In severe cases like Olivia's, she experiences all of the syptoms that I have listed and there is little downtime from symptoms. Being reinfected with strep, a very very common bacteria will ramp up the production of antibodies thus increasing the activity of symptoms. 

So how has this affected our family and Olivia especially? 

She takes more medicines than I can keep up with. She had to drop out of school as she could not function in a normal classroom, and we now do our best to homeschool. We have weekly doctors visits and counseling. It has made it tough for Olivia to make and hold on to friends. She spends much of her day just trying to hold on to the anxiety that is just below the surface at all times for her. 

Finally, why gofundme, and what can be done?

We have recently seen a doctor in Washington DC that is a leader in the field of PANDAS treatment. The recommended treatment for Olivia is called plasmapheresis . It is a method of removing blood plasma from the body by withdrawing the patients blood, separating it into cells and plasma and returning the cells. It is used to fight autoimmune disorders. It is a 4 to 5 day inpatient procedure that will be performed at Georgetown Medical center in a clean environment in a cancer ward at the hospital the week of November 7th.  

Our need is based on the fact that PANDAS while recognized by the national institute of mental health NIMH, it is not recognized by the entirety of the medical community or more specifically insurance companies. Although there is a patient advocate that fights the insurance company on Olivia's behalf, we were told to come prepared to receive and pay the entire bill. $26,750.  This also may not be the end of treatment for Olivia. Our doctor has had a great deal of success in treating patients with PANDAS for many years with many patients never having symptoms again, but a single treatment is not always the cure. Thus, on Olivia's behalf I am asking for your help. I am posting this on facebook and I humbly ask for your help in the way of donations, but also to pass this message along to others you may know that may be willing to help with even a small donation. Any funds above what is needed for her treatment will be used for ongoing treatments if necessary and outstanding medical expenses already in the thousands of dollars. I personally along with my family thank you for taking the time to read Olivia's story and for any help you are able to give.