Stuck in status - Part 3

C. and friend in her hospital bed

Written Saturday, November 11

We're still in the hospital, third day running, but no longer in the Emergency Room. Now we're in the ward.

The major seizures are nearly under control and feeding C. meals is much easier. She even seems to have a better appetite than usual.

The severe seizures do still erupt from time to time. We've also noticed some small, new sorts involving only the face or only her right arm and hand.

A neurologist came by today and promised he'd order another EEG to ascertain whether those new movements are actually seizures.

The doctors are piling on the drugs like there's no tomorrow. When I expressed concern about that, the neurologist promised that two of them will be removed as soon as she's stabilized but I'll believe that when I see it.

So C.'s drug tally now stands at: Keppra (also known as Levetiracetam and given IV while in hospital); IV Phenytoin (aka Dilantin) (to replace the IV Valium (Diazepam) which was ineffective); oral Vimpat (aka Lacosamide); Cannabis CBD (Cannabidiol); Advil (aka Ibuprofen) for her central fevers which are proliferating; and Cannabis THC (aka Tetrahydrocannabinol) for strings of seizures without fever.

As you see, the positive news is in short supply.

Status Epilepticus strikes C.

From an online guide to administering Diazepam rectally

We are enduring rough seizure-laden days. C. has even gotten tangled in status epilepticus a couple of times. It's reached the point where a few hours' stretch without seizures is pure heaven.

This bad run began out of the blue on Friday. As usual, there is no change in her routine or in her diet we can blame.

The Cannabis THC did work this morning, zapping a particularly intense status session. But after my daughter-the-dentist reminded me of it, I asked C.'s pediatrician for a Stesolid script.

So we are now stocked with two boxes of 10 mg Diazapam rectal tubes (the equivalent of Stesolid). We haven't used the stuff in at least a decade but it seems a better option than the ER. We are braced for a fresh round of this curse.

PS: The dreaded status struck again tonight. THC took a little longer to work but eventually reined in the seizures. To inject some variety, C. has also vomited twice in the last 24 hours, raising the suspicion that there's something non-neurological underlying this mess. If there's no improvement tomorrow, we will try to do blood tests.