BiographyCarter and his twin brother were born in 2021. Both boys spent a total of 48 hours in the NICU. The first 3 months of life there were no signs/symptoms of any disability.
One morning in November we noticed eye rolling and arm/leg jerks. We took Carter to our local hospital straight away. After 48 hours an MRI and EEG later Carter was diagnosed with migrating partial epilepsy of infancy. We spent a total of 2 weeks in hospital, he had a number of tests (blood test, genetic, more EEGs, lumbar puncture) all to find out what has caused this. Still to this day all tests come back as normal, it's only his EEG that shows the abnormal changes. We were discharged on 3 different AED - none of which have stopped the seizures, only reduced.
At home we added a new AED a month later which seemed to make the biggest difference (still not fully controlling but reduced a lot)
At 6 months old, Carter was admitted to hospital again due to bronchiolitis. We spent a total of 8 weeks in hospital. We changed some of his medication, removing and adding to see if we can get a better control over his seizures. We also had more tests done as Carter was struggling to maintain his oxygen levels over night only. We had impedance studies, sleep studies, Xray, ng tubes. It was this stay that gave Carter the diagnosis of sleep apnoea.
On discharge we left with oxygen, CPAP machine, suction machine, feeding machines.
Since then everything has been seemingly calm. We've had the odd night in hospital for either colds, PEG fitting, sleep studies, MRIs etc but no major changes.
As it stands Carter's epilepsy has changed over time and he is diagnosed with Lennox-Gastaut syndrome. He is on 3 AED plus medication for reflux, bowels and secretion.
He has nocturnal CPAP daily and oxygen when required.
Carter is still delayed and unable to sit, crawl, walk etc and relies on others for daily support.
Given all of this Carter is a happy, content, loving child who is loved and adored by so many!
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