Patient Stories


May of 2022, our 2 year old began walking oddly. It was such a slow decline, I thought I was going crazy. After a few weeks of realizing there has to be something wrong, I called June’s pediatrician in tears. She trusted me and sent me straight to the Seattle Children’s Hospital ER. After a long afternoon at the ER, they finally had Neurology come down to evaluate her, and they agreed with me that something wasn’t quite right. They admitted us to do some tests the next day, and a lumbar puncture brought us our original diagnosis of GBS. She had her first round of IVIG then (beginning of July) and then she continued regressing. She was readmitted beginning of August (which is when she completely lost her ability to walk) for more IVIG and inpatient rehab. We didn’t see her begin to improve until October. She did physical therapy weekly and took steps on her own (with AFO’s) in December. In January, they changed her diagnosis to CIDP since an EMG revealed active nerve damage was still occurring. They started us on once-a-month IVIG and she has still been slowly but consistently improving. Today (one year after she began showing symptoms) she is physically back to about 90%. I pray that one day she will run and jump like other kids, but we are keeping our hearts open to the possibility that there may be long-term effects. Right now she is happy, smart, and more empathetic than any 3 year old I’ve ever heard of. I’m so proud of her.