Corah's Chorea

It has been 9 weeks since we first noticed our daughter's world turning upside down. It has been a crazy roller coaster ride. 9 weeks ago... We had what we thought was a normal, growing preteen with wild hormones and a rapidly changing body. She would complain about her knees and wrist hurting. She would cry for no reason or for the smallest complaint or frustration. She had always been a busy-body, but was moving more frequently... fidgety... But her penmanship had changed. Her handwriting that was graceful had become similar to a kindergarten boy. When we asked her about it, she shrugged and just said that her wrist hurts when she writes. She offered no complaints other than writing difficulty, occasional headache and occasionally knee and wrist pain. Looking back, in February, she was taking a test and lost her peripheral vision. We took her to the eye doctor and to her pediatrician. Both exams were normal. In early April, penmanship changes. Late April, the complaints increased.

Monday, April 25th

Corah went to the school nurse. Side note: AMY IS AMAZING!!!... Her throat was a little sore. A glass of water cured it. Later that morning, her wrist was hurting her and she couldn't grip a pencil. Amy the Amazing called us concerned. Usually Corah doesn't complain, so she was worried. We made an appointment with our pediatrician. Side note: our pediatrician is as old as dirt and loves to read...translation: he is very experienced and keeps up to date. During the appointment he examined Corah. The exam was relatively normal with the exception of movement of her right hand and mouth at random. He referred us to a neurologist in Indy. The appointment was scheduled in June. No worries. To us, we weren't worried. Our doctor wasn't worried.

Tuesday, April 26th

We got a call. Our appointment had been moved up to May. No worries still. I am a nurse. I know what urgency looks like in a physician. He wasn't worried. He did give us a possible name. Chorea... Movement...

Wednesday, April 27th

defining day. Corah went to school, no complaints. She was herself for the most part. We went to my parent's farm immediately after school. My mother had bought Corah some tuna snack packs and Corah decided that was going to be her after school snack. She began opening the package on the floor. She couldn't grip the package. She tried opening it with her teeth, successfully. I was watching her... she was getting frustrated. She couldn't get the spoon inside the 2 inch opening of the tuna pouch. She kept trying, but her hands were not cooperating. She was flipping tuna all over. She tried to grab her drink, but instead spilled it. She was in a total meltdown. So was I. I couldn't believe what I was seeing. It was like she had a stroke and the right side of her body wouldn't move the way she told it to. I didn't know what to say or do. I just hugged her. I promised her that we would find out what was wrong with her. I told her that no matter what happened, we will get through this together and figure out life from here on out. With or without her right side. I had to go to work that night... I was thankful for the distraction. I needed my friends with medical knowledge to rationalize this out.

Thursday, April 28th

Amy the Amazing called twice. Once for her wrist and the second time for the movement and tears. She was very concerned. We called the pediatrician. He was out of the office. We saw his partner, a doctor that I deeply respect. Dr Pawlowski had seen Corah in February for her headache. He has seen her "normal" on her neurological exam. He noticed right away something was different. He was worried, but he didn't let us in on his worries. He called Riley Children's Hospital in Indianapolis. They wanted her there tonight. Now, rather than later. We were already worried. We were seeing 4 out of 5 symptoms of a stroke. She had slurred speech, she was dragging her right foot when she walked, her right arm dropped when she held them up, and had no grip strength in her right hand. The nurse in me was FREAKING OUT! The mom in me was as cool as a cucumber. Her father was feeling the same way. We had to be STRONG and THANKFUL TO GOD FOR EVERYTHING AND ANYTHING WE WERE GOING TO BE HANDED!

We got to Riley at 530pm. We were whisked to a room in the ER. They did exams, blood work and tests. We saw 3 different physicians and 3 nurses. She was a new case for them. All of her preliminary lab work came back normal. Her head CT was normal! THANKS TO GOD!!! We were told that they were 90% sure that she didn't have a stroke. But still no explanation on the Chorea.

Friday, April 29th

She was admitted to the 7th Floor in the Simon Tower of Riley @ 0130am. More tests throughout the night. CT with contrast at 3am. More blood at 430am. ECHO and EEG @ 650am. No Sleep + Preteen girl = moody and emotional havoc! We had what felt like a bazillion doctors in and out of our room. She was unusual. The docs took video and did "neuro" exam over and over. Each exam was essentially the same. Neurology consulted Infectious Disease. The collaboration of the teams came up with a diagnosis by 4pm. Diagnosis: Rheumatic Fever with Sydenham's Chorea.
Corah was discharge at 530pm. WOW!!! 24hrs and we had a diagnosis.


Since then: Corah has to have Pencillin for "life". She has mitral valve regurgitation.
She has joint pain and sydenham's chorea. Sydenham's Chorea is a movement disorder. It affects the motor-neuro pathways in the body that misfire and cause her right side to move without her knowledge. The joint pain is going away. It is intermittent and is probably more related to her growth spurt in the last month (she's 5'6", 5'4" in December) than to the rheumatic fever. The chorea is still present. It is subtle and we are usually the only people who notice it. The emotional instability is present and is not changing. It is getting a little worse. She has developed an insane fear of sleep and bugs. She is super sensitive to texture, sound and touch. She had difficulty with dressing and picking out clothes. We were walking on eggshells, but now we can't. She sees an occupational therapist to develop her skills for daily life. She worked with speech therapy during school. Her speech has improved and she has found that others understand her more when she speaks slowly. A chatty cathy we now have to force to talk. She is hesitant to interact with other kids. She will begin seeing a psychologist/therapist in the next few weeks to work on the fears and OCD symptoms.
Daily life can be a struggle. She would like to sit in her room and stay there all day if we would let her. But she needs to blossom in the world. She needs exposure to life and learning. We PRAISE GOD for the child HE has given us. We embrace our opportunity to grow with her. To teach her. To love her. Thanks for all of your prayers!


With Love,

The Logan Brick's