Just A Little Update
Oliver remains an inpatient at the JR; He was admitted 20 February with status epileptics and respiratory arrest. The initial clinical presentation suggested an acute meningoencephalitis. Doctors say that Oliver is developing a complex motor disorder with spasticity, dystonia and involuntary movements. Oliver has been taking complex medications to help him, such as Gabapentin, Baclofen, and Clonidine. There has been a difficulty with feeding Oliver, he has had to have a nasogastric tube feed fitted. Oliver has had ongoing difficulties with diarrhoea and vomiting. The feeding difficulties are most likely related to the brain damage.
There is still no firm diagnosis why he has become so unwell. Further tests have to be done from a muscle and skin biopsy and genetic blood tests.
Oliver has now had his Botox in his upper limbs and he is more relaxed in the arms and we are waiting for the tests to come back. His operation went very well and is starting to try to talk.
Oliver has been referred to The Children’s Trust in Surrey and they are coming out this week to see what they can do and if he can be referred there.
Oliver now has a streetwise buggy and a car seat is being made; as Oliver is only small we can still lift him into the car but as he gets bigger a disability car will have to be introduced to the family.