Ok so this is kind of back tracking in time but I wanted to ask your opinions on DS’ epilepsy diagnosis. Will bullet to shorten post.
- Jan-August 2013 DS age 8yrs had 6 tonic clinic seizures (longest was 10 mins) and was admitted twice to hospital. Majority occurred as falling asleep so neuro diagnosed Rolandic Epilepsy.
- Had regular check ups. During that time, neuro did MRI and then said perhaps not Rolandic...but temporal lobe epilepsy.
- so on the follow up letter after MRI, it says:
*EEG- left central parietal epileptiform discharge
*MRI Scan - left hippocampal atrophy with signs of mesial temporal sclerosis versus post octal oedema
So, in the August 2013, he was clinic, having had that diagnosis and having never had meds due to the sporadic nature of the seizures and not having them frequently enough, in the opinion of neuro consultant.
Roll on to Jan.2018 and DS was diagnosed with high functioning ASD in 2016 and we applied for an EHCP.
During the process, the LA asked for advice from different sources, so we had the assessment by the community paediatrician.
He questioned the epilepsy and I think (it was difficult to understand his accent) he implied it wasn’t epilepsy if he wasn’t on medication (he worked a lot with the neuro doc we had been under) and was surprised he wasn’t on meds or surprised he was diagnosed (I couldn’t tell which).
So looked at his follow up letter tonight and it says....
‘Unspecified nocturnal involuntary movement’.
Obviously I’m annoyed. The letter goes on in more details to say...
‘DS had been assessed for possible epilepsy 4 yrs ago when he had unspecified involuntary movements during the night, 6 episodes in 6 months, with no confirmation of diagnosis hence.’
So how do I take all of that? It’s not relevant to the EHCP really, in that DS got the plan and is now in special school. However, I feel a bit odd about his ‘no diagnosis’ when DS hadn’t been under a very well respected neuro consultant for 6 months.
Shall I ask paediatrician to alter his statement?