In November of last year, I took Marc to hospital on three consecutive days during a time when he had a 48-hour EEG. We had to wait until this week before his neurologist met with us to give us feedback and agree a future plan of action.
We arrived and entered the consultation only to be told, “The EEG had not been sent to the appropriate department to report on!”
Oh my word! Why does life have to be so challenging, and supporting our son be so difficult. It was escalated and “in due course” we will get a letter, but the opportunity to discuss any changes was lost.
I became more irritated when the neurologist, a specialist in epilepsy, suggested that some of Marc’s traits may not be epilepsy related.
“What? How can you say that?”
I was told that from what the neurologist had seen from the EEG – even though it had not been analysed – there was no recorded abnormal electrical activity in his brain at the time.
Even I know that an EEG only traces activity on the surface of the brain, and not deep within the brain. That requires a different more intrusive test. I also know that a standard EEG will often not pick up certain seizures such a Absences or activity from the Hypothalamus.
I know what our son is going through every day and what we need to do to support him. I also know what previous neurologist have told us and do not know why that knowledge and the detailed records that I keep is just being dismissed.
A case of ‘Computer says No and so its dismissed’ if ever I heard it.
Why does it need to be such a battle?
I have demanded a second opinion and raised my dissatisfaction at such a delay in the EEG being properly reported on, as you would imagine.
Good for you on requesting a second opinion. Just a thought o my part, do you have any video recordings of the seizures to show this neurologist or any others you might see? As they say – a picture is worth a thousand words
Hi Nora, that is a very good suggestion and though we had a hospital video recording him during the EEG, I have been taking short videos on my smartphone as well. They have accepted these to ‘view’ but even so, there is a strong sense of, ‘if they don’t capture them on hospital kit, they don’t count.’ It’s so frustrating, but I’ll not give up and will find a way to be heard. Thank you as always Nora 🙂