Extended Hospital Stay Means Postponing Peppa’s Burial

Antigone remains in Royal Melbourne Hospital due to a DRESS reaction to an anti-seizure drug – Lamotrigine. So we are postponing Peppa’s burial until after her recovery. Hopefully she will be home by mid-February.

I am updating this post because I misled people into thinking everything is going great. Antigone has a serious condition and it is slow to respond to the normal treatment. Meanwhile, the treatment causes high blood sugar which makes managing her diabetes challenging. Liaising with the many medical teams involved in her care is a full-time job for me.

Visits are welcomed, especially between 12-7:30pm. Please call me first.

Something Positive

Last Thursday, her third day with no Lamotrigine, Antigone was in great shape, thinking and moving better than she has since November – before her most recent brain event (stroke / seizure) on 1 December 2025.

On Thursday she walked for more than five minutes with no aid – for the first time in months. And she could do tasks we thought she could no longer do.

Antigone has experienced new symptoms since 1 December, including: lack of balance and coordination leading to an inability to stand and walk, clouded thinking and inability to to simple tasks, constant lethargy leading to napping away at least half of normal waking hours. We assumed these indicated new brain damage caused by the 1 December stroke. Seeing her emerge from these symptoms for a day proved to us they are not new disabilities of her brain. These symptoms seem to be a result of a chemically-induced clouding of her brain caused by the anti-seizure medications.

Anti-seizure medications (ASMs) seek to prevent over-excitation of brainwaves which are a manifestation of seizures. It seems reasonable to think that as ASMs try to prevent ‘spiking’, they may cause some ‘dulling’.

It seems that Antigone’s damaged brain (due to past strokes, TIAs etc) doesn’t have enough slack to allow her to function with brain activity limitations to reduce seizure risk.

Reflecting after this one clear-headed day, we decided that a clear-headed life with the risk of seizures is preferable to living every day in a brain-fog, being unable to walk or stand, and napping away more than half of normal waking hours – even if it might mean living fewer years of life.

She can’t stop taking ASMs all at once without risking withdrawal seizures. She has stopped the one she is allergic to, but needs to take another to prevent withdrawal seizures. After leaving the hospital, she will gradually taper down this new ASM to nothing .

This discovery about Antigone’s recoverable symptoms is a wonderful highlight of what has been a rather unpleasant 10 days (and it’s not over yet). We look forward to a permanent end to these symptoms when weaning is complete.