The likely culprit for Bertrand's recent hospitalization was depakote. This has been the most effective seizure medication for him to date, but it has many nasty side-effects. We were aware of many side-effects, including liver damage, and were monitoring him for symptoms. Now we have to watch for a few more: hyponatremia (low sodium) and bone marrow suppression.
Bertrand caught a typical virus. (He goes to preschool, therapy, dance, playgroup... he could've caught a bug anywhere.) And then entered a vicious cycle, due to undiagnosed hyponatremia and bone marrow suppression. The hyponatremia alone could've killed him. Normal values are 135 mEq/L. He was at 4 mEq/L. The bone marrow suppression resulted in low counts for all blood cell types--white, red, and platelet. To fight an infection, you need plenty of all of the above.
We are incredibly lucky that Bertrand got sick exactly when, where, and how he did. He was already in the hospital (for a different procedure), with the A-Team for doctors. They acted fast, and he is now on the mend. Bertrand sure knows how to keep things interesting!
A few more items learned from this week:
The targeted dosing greatly changed Bertrand's nighttime EEG! He is no longer in status epilepticus at night, which means the valium protocol is no longer right for him.
The looping episodes, of which multiple were caught on EEG, are NOT seizure activity. In fact, Bertrand's EEG is almost normal at those times. These are periods of alertness and a manifestation of his movement disorder.
Once Bertrand is well, we will conduct another sleep study to see if apnea is waking him at night, thereby triggering those looping episodes.
We will also see about lowering/eliminating Depakote, and/or we may continue to tweak his medication dosing to target the night seizures better. As a substitute for Depakote, Bertrand may try Clobazam.
Next Monday, Bertrand has appointments with his pediatrician and his metabolic doctor to follow-up. He'll be getting labs drawn then too.
To be on the safe side, I've ordered some salt tablets for him. Each pill contains: 215 mg sodium, 63 mg potassium, 11 mg magnesium, 22 mg calcium, 100IU Vitamin D. Bertrand can take 1,200mg of sodium per day, so depending on what he has to eat on any given day, he may get 1 or several.
Paranoid much? me?! Nah.