Sophie - Age 4

Hi,

I’m Sophie.
I’m 4 and a half years old.
I was born with Down Syndrome but I was very healthy and developing well.
At 4 months old I started to regress.
I stopped making eye contact and stopped smiling and laughing.
Then the infantile spasms started. 🙁
At first my Mum and Dad didn’t realise what was happening so it took a month for me to be diagnosed.
I started treatment immediately of Prednisolone, then Vigabatrin and finally ACTH.
The physical spasms stopped but my EEG was still very chaotic with hyppsarrythmia.
I stayed on Vigabatrin and my development pretty much stood still.
I became very poorly and about a year later I nearly lost my life with pneumonia and spent 5 months in hospital. During this time I started to develop Tonic Clonic seizures.
These were very scary for me and my parents as I go very blue and struggle to breathe with them.
Things are slowly improving now and 3 years on from my illness.
I am slowly starting to develop.
I can almost sit up now but I am registered blind and still suffer with chronic lung disease which means I have to be on oxygen every night.
I am now on Sodium Valproate and Keppra for my seizures which seems to be a good combination.
I’m now 7 months seizure free (touch wood)!! 🙂

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