Epilepsy Diagnosis

Published March 6, 2012 by swanfreddie

Freddie was diagnosed with epilepsy in October 2011. We took him to a&e as we were really worried about the jerking motions he kept doing. He would be happily playing when suddenly his arms would jerk upwards for a second & he would start crying. Almost like he’d had an electric shock. They were coming quite close together and were really upsetting him. His head would also push back a bit & would shake for a second.
On the assessment unit 2 doctors looked and said the looked like myoclonic seizures. We were told best thing to do would be to stay the night & we would be sent for an eeg scan in the morning.
A doctor came to see us 1st thing. He knew nothing about Freddies past as we were new to this hospital. We had recorded alot of Freddies seizures & showed them to the doctor. He took one look and laughed at us for thinking they were epilepsy. Me & my partner were so frustrated that he was not taking us seriously. The behaviour that Freddie was showing was so concerning for us & we felt that along with the seizures his development was regressing.
After spending all morning trying to convince the doctor that whatever Freddie was doing wasn’t normal for him the doctor eventually agreed to take copies of our videos & said we could stay in to be monitor or just go home. There was no way either me or my partner were prepared to stay in a hospital where we were laughed at so we went home.
Just as we pulled up outside our house i recieved a phone call from the doctor. He had reviewed the videos again and had changed his mind and decided they did look like epilepsy so we were sent to Alder Hey for an eeg! If only we were listened to originally it would of saved alot of stress for us!
The eeg lasted for 20 minutes. Freddie didn’t seizure when hooked up to the eeg scanner but the doctor said the results seemed consistent with a child who has epilepsy. They think they sound similar to myoclonic seizures but they are not characteristic of them.
They started Freddie on Epilim. He took to it really well & the seizures stopped as quick as they came.
Freddies medication has had to be changed a few times as every few months the seizures reappear. Along with the seizures you can see his development suffer. He is now on 5ml twice a day of Epilim & 1ml twice a day of Clobazam. Hopefully this will keep it under control(although i’m sure i noticed a few before bedtime)
He also had an overnight eeg scan a few weeks back & we are still waiting for the results to see if theres any seizure activity at night.
We are not sure how the epilepsy will effect Freddie as he grows.  Best scenario would be that he outgrows them so it’s one less thing to worry about.


2 comments on “Epilepsy Diagnosis

  • Hiya Darlin, its River’s Mummy here.

    what do your little boys movements look like? and when do they happen the most? River’s are mainly when he is tierd, or falling to sleep. Thank you, Jeni x

  • Please would you email me your reply. Ive looked all thru your site and can really relate to what life is like for you your little man, little girl and partner. I also have a little girl, she is now 4 years old and does her best to understand and is a little sweetheart with all the hospital stays etc xx

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