Age: 1.07
Sex: F
Vaccine: HEPA, MMR, PNC13
Symptoms: Asthenia, Back disorder, Blood test normal, Chronic inflammatory demyelinating polyradiculoneuropathy, Decreased activity
Clinical narrative: She was born of a natural birth with no complications, no allergies and no medical issues. A healthy baby girl weighing 6lbs 8oz. She was a very healthy happy baby with growing and meeting her normal growth and developmental stages. She started trying to walk around 12 months of age and independently at 14 months. Around 14 months we noticed she was waking on the inner part of her feet. She was due for her 15 month pediatrician so we addressed our concerns about her feet and walking at that appointment with the doctor. The pediatrician gave us a referral for an orthopaedic. Her appointment with the orthopaedic was December 30, 2011. Prior to the appointment with the orthopaedic doctor we started noticing her back was curving forward more and more. We went to orthopaedic appointment and I mentioned the feet and also her spine curving forward. The doctor took x-rays and evaluated the concerns I had talked to him about. The doctor wanted to see her back in his office in 6 months for a revaluation, which was scheduled June 30, 2012. She started walking independently around 17 months and was getting stronger and stronger until around February 2012. She started falling more and more when walking instead of becoming stronger in her walking. Around the end of February 2012 her left eye started to drift a little toward her nose. She had her 18 month visit coming up soon so I addressed my concern with the doctor at that point. The doctor gave me a referral for an ophthalmologist and I made her appointment for March 19, 2012. While waiting for the March appointment her eye got worse and her walking also declined. At her eye appointment the doctor evaluated and recommended eye patch therapy and recommended she has a brain MRI. The earliest I could get the MRI was April 5, 2012, so I took the appointment. While awaiting the MRI she started dragging her right foot when she walked. I called the orthopaedic with my concerns and he wanted to see us immediately. Our appointment was moved from June 30, 2012 to March 23, 2012. He evaluated her walking and told me that it looked like a neurological issue with and I need to see a neurologist. He recommended one and gave me his name and phone number. Her next appointment with the brain MRI, April 5th. The results for the MRI came back negative. A few days after that procedure she got a mild case of strep throat I took her to the pediatrician. He asked how she was doing on her walking I spoke with him about how she would not walk but just scoots and that her eye is getting worse (still doing patch therapy). I told him we have an appointment with the neurologist, but the earliest date we could get was at the end of April 2012. He said that his office would contact the neurologist and get us an earlier appointment. Our appointment was moved up to April 10, 2012. During the scheduled appointment the neurologist requested a spine MRI be performed ASAP. His office got an appointment for April 12, 2012. The MRI results came back positive for high proteins and inflammation in her lower back. The doctor admitted her into the emergency room at a hospital to have blood work done. Blood work came back negative. They then ordered a spinal tap done on her. The results came back positive for Guillain Barre Syndrome. She was then admitted into the hospital for two days to receive IVIG treatment. The day after her first IVIG treatment April 13, 2012, the doctors had a more specific diagnosis. They said she had Chronic Inflammatory Demyelinating Polyneuropathy, which is the chronic version of Guillain Barre Syndrome. We followed up with an appointment for an EMG test on April 24, 2012. The results came back positive for demyelinating polyneuropathy involving both motor and sensory nerves. We followed up with the neurologist for her treatment orders for IVIG. She originally was to receive IVIG every 3 weeks. He spoke with me about having a consultation for a port placement. She was having issues with scar tissue forming in her veins from all the IV's. The neurologist ordered for her to have a Medical Port. Her Medical Port was put in July 27, 2012. August of 2012 she started getting weaker and by the third week was not active at all. She just sat on the couch. I called the neurologist and spoke about my concerns. He changed her orders to every 2 weeks for receiving the IVIG at the hospital infusion center. She has become much more active since the change. She also started physical therapy in August 2012. She is 2 years old and her physically evaluation was rated at an 8 to 10 months old child. She is 2 years of age. Physical therapy is going great and she is making some improvements. She also started aquatic therapy September 2012 and is also making progress at that as well. She got fitted for orthotics and should be receiving them by November 2012. She is an active girl these days but still not running around like a normal 2 year old. Her schedule is physical therapy once a week, aquatic therapy once a week, IVIG treatment every 2 weeks, neurologist appointments every 8 weeks and follows up appointments. As of October 2012 she is still not walking independently. She wakes up almost every night in with pain/cramping in her right arm, both leg and both feet. Her left eye has returned to normal. She does crawl slowly and is working very hard at her therapies; she seems to be enjoying life more.