Fighting alongside Bobby G.

On Thursday March 18, 2021 10yr old Bobby G.was taken to the emergency room. He had been sick for about a week but things were progressively getting worse. Although he was discharged, Mom knew better and he was taken back early Friday morning. Thanks to an incredible call by Dr. Valente a pediatric ER doctor Bobby had been transferred to St. Christopher’s hospital in Philadelphia by Friday afternoon. Things quickly changed from here.

Since there have been so many things happening in the days following Bobby’s admittance to St. Christopher’s I’m including the first update and the most recent from his mother. I will then update as I can. As of right  now the diagnosis is Anti-NMDA receptor encephalitis. This is the very thing New York Times journalist Susannah Cahalan experienced and later wrote the best selling autobiography  “Brain on Fire: my month of madness”  - yes it’s also a movie! 

At this time Bobby is expected to remain in the hospital for at least a week. My dear friend, Bobby’s mom has given me permission to start this fund to assist with the piles of medical bills they will soon start seeing. 

We are all praying, rooting and waiting for Bobby to beat this and get back to his amazing, giggling ALWAYS smiling and ever so adventurous  self! We don’t know yet what the future holds for him and his family which includes his 3 siblings, but now is the time to rally together and bring some ease into their lives! 

Update #1: 3/20/21 3:30pm 

Things have gotten much worse. Through the night and first thing this morning, he was doing okay, seeming positive. Still having some issues, but looked on the mend.
At 8am we met with neuro and we had a plan. Still thinking it was viral encephalitis. But wanted to look at more. The plan was steroids and take it day by day, with possibly another spinal tap on Monday, if they didn’t have enough fluids left over from the original tap.
At 10:00 he had a seizure. 1 minute long. Full tonic.
He was then in an unexplainable state of agony. His eyes were open but no one was home. And he was in no control of his bodily movements.
By 1:00 he was moved to the ICU.
And by 2:00 he was hooked up to the EEG.
They’re saying that he is suffering from Acute Disseminated Encephalomyelitis (ADEM) ~ this is the current direction, but more testing will be completed.
He is starting the steroids today and is also now on Keppra for the seizures.

Update #9: 3/23 4am 

The nurse just told me that his heart rate is going down to as low as 32 while he's sleeping. Aka Bradycardia (yeah, I’m learning a lot of medical terms these days!)

An EKG was done around 9:30? So cardio is aware.

Every time his heart rate dips, the nurse is prompting a blood pressure check. She said that the heart rate comes back up on the quicker side, which is positive, but 32 is so low.

He’s also having trouble sleeping. (I guess almost 4 days of sleep wasn’t enough??) jk. So he’s waking up way too often. Unfortunately we can’t give him anything to help him because of the low rate. And we could potentially give him melatonin, but not at 3:00am.

I’ll find out more in the morning when I ask questions to the doctors. The REALLY great thing is that they do rounds right out in the hall in front of each room. And they welcome parents to come be a part of the conversation amongst all of the different point people. I went today, and it's informative. I have been very pleased with the care he’s been getting from the ICU here.



what is Anti NMDA Receptor encephalitis