Summer Break.

18. Aug, 2017

The summer holidays are by. School term started again. So another term begins. Attendance just under 56% last Block.

The Report Card states 'Due to Absence' the class work not completed. No rephrase that please! There are reasons for these absences. The wording ambiguous to me. It's just not right!

Due to Epilepsy and Nocturnal Seizures my Son could not attend. There was a reason for this absence. It's a life long and changing medical condition for him. 

Nocturnal epilepsy is a seizure disorder in which seizures occur only while sleeping.[1]Several common forms of epilepsy, including frontal lobe epilepsy, can manifest in a nocturnal state.

Epilepsy can be nocturnal if the form of epilepsy triggers seizures only while one is asleep, or if one normally has seizures that occur at that time. In the latter example, if the subject stays awake at a time when he is normally sleeping, the subject may have the seizure while awake. Noting this, it is important for the subject to maintain a proper sleeping cycle. Diverting from proper sleep patterns can trigger more frequent epileptic symptoms in people who are diagnosed with nocturnal epilepsy and, as mentioned before, even while awake.

Irate at the constant 'groundhog' days. You constantly go over and over again. The repetitive dialogue you endure surely grates your nerves. Does anybody truly listen to the effect epilepsy & uncontrolled epilepsy has on a person!

3 days back in school. The lethargy kicking in. This morning seizure from sleep. Off school today.. Resting & in bed. 

We had our break in the Midlands seeing extended family members this Summer. Nothing over duly demanding. This is what my son likes. Hot Tub helped his Hemiplegia.The demands and the medications you have to take with you insurmountable. The planning has to be meticulous. So much to think about.

Seeing the Neuro Surgeon in 6 weeks time. Residual Tissue from the Hemispherectomy in 2006 causing these further seizures. The Ketogenic Diet will not work. The VNS I'm told no good. Further Surgery is out of the question. So In limbo.

We need to, I need to now look at CBD Oil and the Epidiolex. We've ran out of options. The drugs don't work. 

https://www.google.co.uk/url?sa=t&source=web&rct=j&url=http://m.belfasttelegraph.co.uk/news/northern-ireland/northern-ireland-mum-hails-sick-sons-miracle-response-to-cannabis-oil-35911297.html&ved=0ahUKEwik9u-40eDVAhXsLcAKHUXuC74QFghOMAo&usg=AFQjCNFtAnTukndQuMfQKTFcsi6C9dyGzQ

Still, I have my happy boy who against the odds fights this Epilepsy. Why is so little precidence given to finding the Cure. Yes there has been improved research but not enough in my view. The people whom have their seizures under control still have the stigma attached. This condition is so much frowned upon and misunderstood still in the 21st century. 

Personally, I find some family members the worse with ignorance. You cannot educate the uneducated. Staying away suppose the easiest option for others.

We need a Miracle.

One day at a time. No forward planning is viable nto the future for us.

Julie x

NB

Classification Of Epilepsies Updated

The International League Against Epilepsy (ILAE) recently updated the system used to classify different types of epilepsy. It is hoped that the new system will pave the way to better research, diagnosis, and treatments in epilepsy.

In a press release, Professor Ingrid Scheffer, a paediatric nephrologist and professor at The University of Melbourne said: “The new classification will help clinicians to think more deeply about each patient so that they can improve their care with optimised treatment and understanding of their disease. It will also be used for research into the epilepsies and to frame collaborative approaches that will lead to greater insights into this important group of diseases.”

It is important to have a thorough classification system as “applying the right therapy often depends upon knowing the precise type of seizure,” according to Dr Robert Fisher, the director of the Stanford Epilepsy Center. The last classification related to epilepsy was published in the 1980s and failed to capture many types of seizures.
According to Dr Fisher, the new classification system may also help patients and families better understand the name of their seizures. “[F]or example, a ‘focal aware seizure’ is more understandable than is the old term ‘simple partial seizure’,” he said.

The 2017 ILAE seizure classification includes the whole clinical picture of epilepsy underlining the potential causes of the condition. Groupings the different types of seizures in this way could lead to the advancement of research and the development of potential new treatments.

Three research articles outlining the changes in the new classification and providing guidance on how to use it in clinical practice have been published back to back in the scientific journal Epilepsia. They are titled “Operational Classification of Seizure Types by the International League Against Epilepsy”, “ILAE classification of the epilepsies. Position paper of the ILAE Commission for Classification and Terminology”, and “Instruction Manual for the ILAE 2017 Operational Classification of Seizure Types”.