I know I’m new at this whole parenting thing but I can’t imagine many things being harder than seeing your baby in so much pain that their tiny body can’t process it and it culminates in seizures. Knowing that the seizures are a result of pain, but not having any medical explanation, has been one of my biggest battles for the last year. I’ve been through every single avenue possible to explain Isla’s seizures from magnesium-sodium balance, small intestinal bacterial overgrowth, abdominal epilepsy and just plain epilepsy. We’ve tweaked drugs up, we’ve tweaked drugs down. I’ve been adamant that she hasn’t got epilepsy and it’s something I can solve and when Isla can’t give us any feedback it’s been relentless guess work and processes of elimination.
If you’ve ever seen someone have a seizure it will be up there with the scariest things you’ve ever seen. If you haven’t, lucky you!
Isla’s seizures actually started when we were in hospital. They may have actually started before we realised and we thought her new larger sized ng tube was causing respiratory arrest… oh that emergency buzzer!
Initially the Neuro team dismissed what was happening as seizures. They reviewed all the videos I had taken (because I was asked, not for fun!) and decided that they didn’t fit any common seizure pattern and it wasn’t a neurology team issue. They contacted the Gastroenterology team, who suspected the same as me (Dr Google), it was a pain response called Sandifer’s Syndrome, caused by acid reflux. Isla was started on reflux meds and put back on to a thicker milk. The seizures stopped and a few weeks later we were back on track for home.
After 1 month at home, Isla began displaying a few ‘reflux’ episodes but nothing too worrying. She began to get increasing amounts of blood in her stool, leading us to swap milks again to an amino acid based formula, to eliminate any cows protein allergy response. The new formula seemed to do the trick and we had a happy, non-blood pooping baby. As planned I went back to work; it was the 4th of July, I remember because I recited the President’s Speech from Independence Day (as I do every 4th July) and played Buckeroo with office objects on Jan in the Office (surprisingly). I wasn’t teaching that day as part of a phased return, so I was working on computers when I got a phone call from Kerry; Isla had stopped breathing for a spell but she came out of it and seemed ok now. If you close your eyes and take a deep breath, you can probably smell the burnt rubber from my tyres.
The rest of that day she was fine but as I left the house to go to work the next day, she did it again. My CPR training immediately kicked in. I calmly tapped her on the shoulder and asked if she was ok, then told someone to call 999… Or I picked her up and shook her to see if she responded while screaming at Kerry to ring an ambulance! She had a pulse so it wasn’t her heart but she was barely breathing. I gave 2 rescue breaths and tried to get her to snap out of it. After one very long minute she came round and it was like nothing had happened.
It always surprises me how long it takes to set off in an ambulance. Isla was hooked up to an ecg and oxygen as her O2 sats were very low and I explained Isla’s complexities. Her LQT was already known to the ambulance service but every paramedic so far has told us they’ve had to read up en route. As we drove to Bolton Royal the paramedic told me he’d never seen a torsades, it would be interesting to see one… no pal, no it wouldn’t! In the ambulance Isla had another spell, her oxygen level dropped to 40 and her heart rate hit 180. The blue lights were turned on!
At the hospital Isla had repeat episodes through the night, all lasting around 1 minute. It seems like an incredibly long minute. The next morning, during ward round, Isla decided to up the ante. Her seizure lasted longer than normal and it morphed into the typical seizure you might generally think of when someone says seizure. Her full body, arms and legs were jerking rhythmically; she was having what is called a tonic-clonic seizure. The team flew into action and she was given iv drugs and pain relief to ‘rescue’ her from the seizure. Plans were made and transport arranged to transfer her to Alder Hey.