Demi-leigh was diagnosed with severe hydrocephalus at 15 weeks gestation. When she was born she got to 10 weeks before she had her 1st operation of an ETV - due to her head growing from pressure to her brain, which quickly failed so at 12 weeks she had a VP shunt inserted. She ended up in hospital for 2 weeks due to an infection in her CSF fluid.
From here she faced weekly physio sessions to build up her strength and for her to learn to hold her adult sized head. She would get very tired and frustrated. Paediatrician and neurosurgeon kept asking if she had any seizures with which I'd look at them puzzled and say no...
Demi-leigh reached her 2nd birthday and had learnt to walk with a Kaye walker. We saw the neurosurgeon the day after her 2nd birthday and again was asked about seizures again I answered no. 2 weeks to the day the we saw that surgeon Demi-leigh suffered her 1st seizure. We went to hospital and discussed medication and having an EEG but they didn't want to rush things incase it was a 1 off but, 8 weeks later she had her 2nd seizure. She had an EEG done and it was confirmed that Demi-leigh has epilepsy. She was started on medication but soon suffered a 3rd seizure. Her medication was upped again but in August she had a really big seizure which resulted in her breaking her arm as she fell.
Demi-leigh has had her medication upped a few times since then as she is suffering absences, she doesn't like crowded places and gets very anxious.. we have had some fab news that she will be starting a special school in September after fighting for a year to get what she needs. She is a very happy determined little girl who makes everyone she meets smile, she has a hug for everyone she knows and likes. And loves to play BOO with everyone..