"My son and his epilepsy"

My young son was diagnosed in 2019 with epilepsy and takes mostly focal seizures most of which have been prolonged.  He also has a tissue disorder in his brain. 

Starting in August my son was having sudden episodes of sleeping lasting from 5 minutes to a few hours, he became more withdrawn in himself lacked any energy to do normal child activities this resulted in school dropping him to half days.

Communication with the paediatric epilepsy team in Kirkcaldy we find poor.  I have essentially begged for a EEG to see if my son is having anything serious like chaotic brain activity etc. this has been refused with no real reason from the doctor other than saying that even if he did have it there’s nothing they can do about it. 

It was suggested by the doctor today at a outpatient appointment (the first my son has seen a doctor since his sleeping symptoms started in August) that it was behavioural.  We find this an appalling assessment to make with no evidence to back that up, a young child should not be suddenly falling on the floor, suddenly lying down and sleeping within seconds in soft play centres, school, shop floors, at home, even in the swimming pool.

There appears to be no urgency or real proposal from the doctor or the epilepsy team with what should come next for my son no tests or investigations booked. My son was a happy energetic little boy 7 months ago now he is a extremely exhausted, unhappy, little boy who can’t make it through 3 hours of school a day without sleeping. The doctor was also made aware my son has been off-balance, slurred speech, walking into things and still hasn’t made a effort to investigate. No one has even physically examined my child to date. 

My son is being extremely let down, myself as his mum and the staff in his school are concerned about how exhausted he is. 

It is my view the care he has received/receiving falls bellow what is expected when a child presents with such symptoms with an underlying diagnosis of epilepsy. 

I have asked repeatedly for a second opinion which I’m still to receive. 

Something needs to change. NHS Fife are not getting it right for this child. 

I as his mum have a physical disability making it incredibly difficult to lift my son off the floor in shops. There’s been so support or suggestions from the medical team responsible for my son in regards to this. 

I hope there’s a resolution to my son’s situation…. A extremely worried mum.