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Jy’s Bickerstaff Brainstem Encephalitis and Guillain-Barre Syndrome Update

Jy’s Bickerstaff Brainstem Encephalitis and Guillain-Barre Syndrome Update

(Note: I am giving these updates because when my son was diagnosed with encephalitis and Guillain-Barre Syndrome, I couldn’t find a lot of information on the recovery for children. I was scared and didn’t know what to expect. This is still a rocky process for us, but I hope that these posts can help others understand that they are not alone and identify some resources to help during the recovery phase.)

Jy completed six months of physical, occupational, and speech therapy. Although he is “functioning,” I don’t believe the treatments focused specifically on his brain issues. I asked his second-grade teacher to provide me with a summary of how Jy was before and after the encephalitis/GBS. Here is a great summary:

Based on my observations before Jy’s encephalitis:
– needed to be redirected to complete a task
– needed more time to complete his work
– desk would be disorganized
– would be easily distracted
– struggled to finish a writing project
– reading fluency was more smooth with only a few repeated words
– was able to control emotions more effectively
– able to complete math story problems with little assistance
– raised hand with less shouting out

 

Based on my observations post encephalitis:
– redirection increased due to off-task behaviors
– needed to be reminded what to do next
– increased amount of time needed to finish a task in Reading and Writing
– an increase in being easily distracted
– frequent distractibility to normal environmental noises
– when reading then repeated words increased frequency, i.e., the, the, the
– emotional triggers were inconsistent
– feeling that others were in the wrong or hurting his feelings, unable to accept responsibility
– increased stemming tactile behavior with nose picking and eating it while talking to me or other students. Showing a lack of  awareness. Also repetitive stemming with rubbing his thumb and index finger.
– increased disorganization
– easily frustrated
– increased frequency in calling out
Jy struggles with math story problems now and anything that takes concentration such as comprehension questions. He doesn’t understand situations well and thinks that other people are trying to hurt his feelings intentionally. He is super emotional. Jy’s coordination is not the same as well. His balance is a little off, and he still bumps into things.
 Jy emotional
 
Jy’s speech therapist recommended that he try Brain Solutions. Rehab for the brain in the pediatric population is horrible in Las Vegas. Jy had more options at Primary Children’s in Salt Lake City. They focused on cognition and processing therapies. At this point, my husband and I don’t have our same child. As parents, we are willing to get Jy whatever treatment he needs to function at his optimal level. At Brain Solutions, a hearing and auditory processing screen were conducted. The results of the screening are below. After this evaluation, my husband and I decided that he should formally get tested for Auditory Processing Disorder. Las Vegas does not have one health care provider who can perform this evaluation! We were referred to Dr. Best in San Diego. She also evaluates imbalance, so we are super excited about this. She will help with a specific plan for Jy’s needed therapies based on the evaluation. She also helps with his 504 plan. Thank goodness!!! Dr. Best has great information on Auditory Processing Disorder.
Jy’s standardized reading scores dropped from last year. He scored well above average last year each time he was tested, and now, he is right at average (but on the line for below average). It has been frustrating connecting the puzzle pieces together to understand how Jy was really affected post Bickerstaff Brainstem Encephalitis and Guillain-Barre Syndrome (after the flu mist). Every specialist has a piece of the puzzle, but it is up to the parent to complete the full picture. If my husband and I weren’t persistent in getting the best care for our son, he would just be “functioning.”
What we are waiting for: Results from neuropsych. testing. Results from Auditory Processing Disorder and imbalance testing. We should receive these results within a week.
For 2016, the CDC doesn’t recommend the flu mist anymore. 🙁 I’m glad, but I wish this announcement were made last year. This is per the Advisory Committee on Immunization Practices recommendation.
On a positive note, Jy is improving slowly month to month. His confidence has not been affected. He often says that he was the best kid on the soccer field 🙂 (although he is far from that) (His perception is off in many situations. We tell him that everyone played great to keep his spirits high.). He does well on his penalty kicks during practices. This always makes him smile. Jy lives in a loving home and is surrounded by a great soccer coach and teachers, friends, and family. He is loved no matter what condition he is in. One doctor who I respect greatly told me that no one will care about the health of your child like you will. You need to seek answers. Another doctor said that the parent drives the ship. I think it is important to go with your gut or intuition. My husband and I have to live with Jy every day and will be in his life forever. We will do whatever it takes to get him to his best self.
P.S. Dealing with insurances is another nightmare! Ugh.
P.S.S. Jy is still as sweet as ever.
Ipuna Black

Ipuna Black

I’m the mother of four children and have worked in the area of pediatrics as a nurse since 2001. A few initials I have accumulated include: PhD in Nursing, MSN in Nursing, Pediatric Nurse Practitioner, and RN. My seven-year-old son was hospitalized in 2015 for almost two months with encephalitis and Guillain Barré syndrome. This gave me a deeper perspective on health and wellness for children, and Healthy Kids Play was born. Healthy Kids Play is a child health and wellness blog sharing resources and information to help parents make informed decisions to keep our children healthy and playing. My mission is to help parents, caretakers, educators, and researchers raise healthy kids by sharing resources and information on the multiple influences on child health (physical, intellectual, emotional, social, spiritual, and environmental). I hope to inspire others to keep our children playing. After all, they are our next generation.
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