As told by dad Stuart - My daughter Mabel is 15 months old. To anyone who doesn’t know (and many people don’t), she looks like any normal 15 month old girl. She loves Wotsits, transfixed by Hey Duggee, and she loves to annoy her big brother by playing with his toys.
In June, Mabel had her first seizure – an absence seizure. My wife had just got her out of bed, and was holding her in front of me, when she had a ‘moment’. Literally, her face went blank, and it looked like she had gone to sleep with her eyes open. This lasted for roughly 30 seconds to a minute, before she came back. Initially, we thought nothing of it, and put it down to her being hungry, having low blood sugar levels. Once she’d eaten and ‘perked up’, we carried on.
A while later, she had her first tonic clonic seizure. I was on my way to work, it was around 8.10am, and my wife phoned me screaming that Mabel had turned grey, was shaking, and in an ambulance. I never drove home faster as I did then. The hospital nurses put it down to a febrile seizure, as I think at the time she had a cold, or tonsillitis. Nonetheless, an appointment was made with the Epilepsy Consultant for a follow up.
We didn’t get that far. July 2nd – it’s a Monday. I get to a meeting at 9am, just as the wife calls. Mabel had another seizure and they were waiting to hear from the hospital as to whether we should go in. I have my meeting, come back out, and Mabel is in an ambulance. Again, a race home. Get to the hospital, and Mabel is sitting up in bed, having a great time. However – it then happens. The worst seizure to date. Turns blue, grey, struggling to breathe. The works. Within about two seconds, there are about ten doctors around Mabel, giving her some air and bringing her back. The wife is screaming, I didn’t know what to do. That’s my baby there, in trouble.
Mabel was admitted to the high dependency ward of Colchester Hospital – you know you’re in trouble when you’re on a high dependency ward. It must be serious. More tests, this time a bit more intensive. Brain scans, EEGS, more blood (Mabel has chunky arms so blood doesn’t come easy!), more urine. July 4th – we were told she has infantile focal epilepsy. Life changes.
Since then, July and August passed in a blur. I think we counted an average of three seizures a day. In and out of hospital, we get to know the names of every doctor and nurse on the Children’s ward, which is pretty depressing when you think about it. We’re famous for being admitted to the same bed every time we stay the night – C1, or the Mabel Ward – and also famous for having seizures when we leave the hospital. On Monday, we were discharged three times – each time she had a seizure on the way out of the hospital.
September was great – three weeks without a seizure, and we think we’ve cracked it. Then back in hospital at the start of October. Her seizures at this point were the worst to date, literally turning blue and breathing stopped for a brief period. Again, it’s slightly depressing recognising ambulance drivers.
We are now under the care of Addenbrookes, and awaiting the results of some genetic and chemical tests to find the trigger. She has seizures everywhere – in the bath, in the car, in her bed. When it’s warm, when it’s cold, when it’s bright, when it’s dark. As far as I can see, there is no ‘environment’ trigger, so it must be something deeper.
Mabel takes four different meds each day – Keppra, Clobazam, Pyrodoxine and Epilim. We also have the rescue medicine, which we’ve not yet had to use as most of her seizures last 3-4 minutes.
Mabel’s last tonic clonic seizure was November 29th. Nearly five weeks of being seizure free (apart from a few ‘blank’ moments, which may or not be absence seizures). This is despite being admitted to hospital shortly before Christmas with acute tonsillitis. Amazed that, despite having a temperature of nearly 41 degrees, we are now in our longest run of being seizure free since all this started last May.
Being seizure free has allowed us to see some positive signs of growth in Mabel for the first time in forever. She is now crawling (army style) everywhere. Getting into places where she shouldn’t be, pulling at leads she shouldn’t be pulling at. Very tiring having to chase after her, but rewarding to see her growing. Her communication is starting to develop, starting to respond to ‘ta’ and babbling more. Slight concern remains that she doesn’t stand yet, or like to put her feet down, but we can work on that.
Results from all her various tests have come back with ‘no diagnosis’, so waiting to see what happens now.
I don’t know what the future holds. We’ve been told that the seizures have ‘damaged’ her brain in terms of brain waves. Who knows if she will walk, talk, run, like a normal girl? I’m a nervous wreck, definitely suffering from stress and probably depression. Every time the phone goes, I expect it to be my wife telling me to come home. Every time I hear her call her name when I’m in a different room, I expect Mabel to be having a seizure. Not a fun way to live.
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