It’s been almost six months since Jy was admitted to the hospital, 10-23-15. I wanted to give an update on his recovery because when I was searching the web for children recovering from Bickerstaff, Encephalitis (in general), and Guillain-Barré Syndrome, there wasn’t a lot of information available. I hope that his recovery will help other parents or practitioners understand the disease process better. I know that not everyone heals the same or some may not heal at all, but here is Jy’s case.
History of events leading to his hospitalization:
Flu mist 4:00 pm in Pediatric office.
Jy fever 100.5. Missed soccer and school.
Didn’t take temperature, but had swollen eyes. Thought it was allergies. Gave Jy Motrin and Benadryl for bed.
Jy lethargic for soccer game. Not eating much over the weekend. Had swollen eyes.
Jy had swollen eyes still. Gave him Zyrtec before school and allergy eye drops. Jy lay on the couch after school. Temperature of 101.3.
Jy started throwing up in the middle of the night. Fever and vomiting continued through Thursday. Swollen lymph nodes today.
Jy had a fever of 104.9 F. He said, “Cut my head off. It’s going to explode!” Took Jy to Pediatrician. He saw a PA. He barely walked in. Strep tested positive. Started amoxicillin right away.
Amoxicillin didn’t work. Fever persisted. He threw up every time he sat up. Jy said, “Carry me to the bathroom or I’ll crawl.” I carried him to the bathroom, and he couldn’t stand. I called the Pediatrician’s office in the morning. The receptionist scheduled Jy to see a physician at 3:30 pm. Around 3 pm, Jy urinated on his sweatpants. I asked him if he “peed himself.” He indicated that he did not (although he did). In the pediatric office, a doctor assessed him. When she sat him up, he threw up and urinated at the same time. She referred him to the PedsER. At 5:15 pm, his father carried him into the PedsER. He was neurologically appropriate, but he kept saying, “Cut my head off. Cut my legs off.” He was in pain. Over the next 5 hours, he had X-ray, lumbar puncture (LP), and blood work. By the end of the five hours, he became more disoriented. He would say, “I need to pee.” I would help him, but he would look at the urinal like it was a foreign object. He would push it away. Then, he would do this over and over again. The initial diagnosis based on his lumbar puncture was viral meningitis. He had slightly elevated WBC’s and protein. He was admitted to the PICU.
Jy went into a coma. He became more alert after he received IVIG (I wish he received it sooner.), but he became paralyzed. That’s when he received the two diagnoses: Bickerstaff’s Brainstem Encephalitis and Guillain–Barré syndrome. He had an autoimmune response to the flu mist. He has received the mist before, but his body reacted differently to this strain. It is VERY rare.
6 months later:
Neurologically: He still goes to speech therapy once a week. I believe he still has the intelligence of an eight-year-old (He turned eight this month!), but his processing and reasoning are at the developmental level of a four or five-year-old based on testing and observation. He will complete an official neuropsych test at the end of May. This should help us determine what accommodations he may need in third grade. He argues with his three-year-old sister over young toys. He will say things like, “You’re not sharing.” Or “You need a time-out.” He often acts her age. There are other times where he acts closer to his age. He has told me, “Don’t treat me like a baby.” When we first got home, he sensory was way off. He didn’t like loud noises. He didn’t like hair on his neck after he received a haircut. He wanted me to wipe the rain off my car windows immediately. This has gotten better, but sometimes, he still struggles with noise (even whispers). He fidgets with his fingers a lot which he didn’t use to do, especially when he is frustrated. He dropped about 40 words per minute in reading when we got home. He has increased to 10-20 words per minute slower than he used to read, depending on how tired he is. He used to need frequent mental breaks during homework, but this has gotten better. He now needs Adderall to concentrate at school. He never needed this before. His teacher notices right away if I forgot to give him his medication. He struggles to sit still or stay on task now. Occupational therapy helps him with sensory and coping. Board games help him with processing.
Socially: When he first got home, he would play with toddlers on the playground. He is playing with kids his age now. He used to play alone when his friends came over too, but that has gotten better. Often, there is no middle level for him. If he gets upset (or sad), he goes from zero to ten in seconds. This has been challenging with friends. He didn’t have a filter when we first got home and had to relearn boundaries, but he has gotten better.
Physically: He was playing competitive soccer at a high level, and he was able to compete in tournaments. He began playing club soccer again in January, but he is not as fast or coordinated as he used to be. He has said that he wants to quit soccer and gets frustrated because it is hard now. He is playing soccer like he used to when he was about four-years-old. A couple of weeks ago he said to me, “This is so embarrassing. I used to play club soccer, and now I’m playing rec.” He can’t understand why his body can’t do what it used to. At first, he didn’t notice, but now he does. I think it is a good sign because I believe his brain has matured over the months. He still attends physical therapy once a week to get his strength, coordination, and balance back. His balance and coordination were at the level of a four or five-year-old when we first got home. He has better endurance and is running faster than when he first got home, but not as fast as he used to.
Emotionally: I think some of his emotional distress comes from frustration that he is not the same as he used to be. He struggles to cope with this. The therapist, his father, and I work with him to relearn coping strategies. He cries very easily, and we try and help him think of other ways to cope when he is frustrated or sad. His emotions have been one of the hardest issues to deal with because at times he doesn’t understand why he is so upset, but he can’t stop crying. The Adderall has made his emotions worse, but when he is on the medication for a week straight, he seems to be less emotional. I believe he lost the pathways in his brain on how to deal with situations, so he defers to crying. With time, we hope that he can relearn proper coping mechanisms. (Side note: He will be off the Adderall for the neuropsych. testing.)
Ultimately, Jy has been doing better over the last six months, but the recovery hasn’t been as fast as we thought it would be. Jy’s neurologist told me that the brain could take up to two years to heal. He is also healing from Guillain–Barré which adds physical limitations and fatigue. I think Jy has done really well so far, considering he was supposed to sit out of PE for the rest of the school year! I’m not going to act like everything is wonderful. I’m grateful that I received a second chance with him because some people who go into a coma never return. But it has been difficult to see my child so different than he was before the injury. It’s hard to watch him get frustrated because he can’t do what he used to be able to do. My husband and I take it one day at a time with him. He has good days and bad days, and we pray that with time, he will have more better days. We are grateful for him (and all of our children) every day. Our goal is to help him be his best self. That’s all we can ask for.