Hospitalization FAQs

At last Monday's EEG Bertrand looked bloated and pained.

What is happening? Tumor? Biopsy? When did all this come about? Why did you decide to stop the Ketogenic Diet? Was there some big event that I'm missing? How did he even end up in the hospital again? Is your dad in Utah? Are these enough questions?

We've been getting a lot of questions in regard to Bertrand's hospitalization. This is my attempt to recap the events that led him here and provide answers to the most frequently asked questions. Warning: I am extremely tired and may not quite finish this blog post.

Bertrand was moaning, sleeping or moaning AND sleeping the past 2-3 weeks. And he was "gaining weight" in spite of having his calories drastically cut twice.

At the neuro appt after his EEG on Monday, the neurologist was shocked because his EEG looked SOOO much better but she agreed that Bertrand was acting "off" and not consistent with roid rage. Bertrand had started spitting up a bit so she thought he could have a gastric ulcer, which is a side effect of ACTH. She told us to see the pediatrician about that.

On Wednesday we went to see the pediatrician. Just looking at him his pediatrician thought Bertrand's breathing looked fast and labored. Upon a closer check, breathing and heart rate were through the roof. She checked his O2 saturation and it was bouncing around 85% and would dip even lower when he fell asleep. Hypoxia: not good. She said she was going to admit him.

She put him on O2 right away and his color and mood improved dramatically. She thought he was just chubby and may need his calories cut but there was a small chance he could be sick and have pneumonia. She ordered a virus culture even though he didn't seem sick (no fever and barely and mucous). It was a good thing she did because turned out he had RSV that was being masked by the effect of ACTH. She wanted x-rays to check for pneumonia, and the x-rays could barely show lungs there was such a GI back up.

Since then, we've been trying to figure out what is wrong with Bertrand's GI. Why is it backed up? Why are things not moving? Massive amounts of miralax, senna, and two edemas have done virtually nothing for Bertrand's belly--well, besides cause bowel movements that would make an elephant proud. Bertrand's belly keeps getting bigger. This is a large reason why Bertrand was taken off the ketogenic diet--the diet slows down the GI tract and causes constipation. Doctors may be starting Bertrand on antibiotics tomorrow to help with "motility" because his GI system isn't moving things along fast enough, if at all.

Bertrand is getting a liver biopsy on Monday, as best as I can tell, because his liver enzymes have always been super high and he wasn't going to get discharged anyway. GI is insisting on the biopsy and neurology had mentioned they wanted to check for Lafora Disease and ULD, and ophthalmology mentioned they wanted to photograph his optic nerve to check for degeneration (while Bertrand is sedated). SO several birds are going to get killed with that stone.

To check for ascites and prepare for the biopsy, Bertrand got an ultrasound today and on the ultrasound the radiologist found a "questionable spot". We're waiting to see if/when he's getting an abdominal MRI. (My dad, who is leaving tomorrow, didn't think it looked like a tumor.)

Bottom line, Bertrand will be inpatient until at least Tuesday. More to come when I can think straight...