Seizures increasing - Abby moved to PICU

I last updated you on Tuesday when Abigail was transferred from Lewisham to Guy’s hospital in London. The first half of the week was reasonably quiet for Abby but her fitting has spiralled out of control again these last few days. On Wednesday she had another EEG brain scan which will be repeated again tomorrow (Monday) because her fitting movements meant that readings were difficult to gauge for any length of time. What was noted was abnormal activity on the left side of the brain during seizures. In addition there were some occasions where Abby had some ‘abnormal’ physical movements that did not correspond with any abnormal brain activity. This seems to suggest that some movements may not necessarily indicate epileptic fitting in themselves. Having said that, the overt physical manifestation of Abby’s seizures has increased and become much more obvious over the last three days or so.

It’s been clear to see that Abigail has become more and more acclimatised to her seizure intervention drugs over the last few weeks. Whereas a month ago a dose of Lorazapam would leave Abby settled for a good 24 hours, it has gradually become less effective. These last two days have seen Abby fit a lot more and respond very little to many of the drugs that used to work for her. Both Paraldehyde and Lorazapam have been administered without much effect and doctors don’t want to continue with a care plan that no longer seems to adequately control Abigail’s seizures.

Nix and I went to visit on Saturday and were with her during a one hour episode. She would seize for 10 minutes before coming out of the fit for a minute or two and then regressing back into a seizure. Abby’s feeds have been increased again this week to the highest level they’ve ever been, but virtually all her energy is being spent on the relentless fitting and so there’s still very little chance of her gaining weight soon.

Abigail fitted almost continuously from late Saturday evening all the way through to this morning (Sunday) and we were called by the hospital to be told that Abby would be moved from the neurological ward down to the Paediatric Intensive Care Unit at lunchtime today. This was because Abby really needed to have much higher loading doses of drugs which required constant one-to-one nursing. With doctors running out of options to control the seizures, a last resort would be to deeply sedate Abby to stop the fitting and allow her a day or two asleep to rest. The drug doses required to achieve this need constant supervision and can often have an effect on the respiratory system. In fact, if Abigail is put into a very deep sleep to stop the fitting it’s likely that she will be intubated with a ventilator to breathe for her. This could cause other complications later on but may be the only short-term option.

Earlier this evening Abby was given yet more loading doses of Phenytoin to try to increase the levels of the drug in her blood and an IV infusion of another sedative was also increased. We have just rung the hospital (at 11pm) and thankfully Abby has been asleep, settled and not fitting since 8pm tonight. So far she is maintaining her own airway and is breathing without any assistance.

Other brief news:

• Abby is a separate cubicle in PICU because of her MRSA virus – more swabs have been taken to see if she still has it and results are expected in the next few days.
• Once Abby’s fitting has subsided a bit more, a CT scan of her skull will be undertaken. Nix and I have expressed concern at the abnormal shape of the back of Abby’s head – doctors have agreed that it’s not quite right and this will be checked out to examine whether it might be a contributing or causal factor in her fitting or brain damage.
• Despite Abby’s feed being increased this week she’s now back on intravenous saline fluids whilst the stronger sedative drugs are being used.
• We hope to meet and talk with the senior paediatric neurological consultants at Guy’s on their ward rounds either tomorrow or Tuesday.