22. Jul, 2018

Into Adult Services from Paediatrics.

 

Well, who would have thought against all the adversity my son Lewis has faced, he finished Education recently.

How proud am I of him. Honestly never thought this would happen.

Next stage into adulthood. I'm sure he will shine. 👍✅⛤

#Epilepsy #seizures #hemiplegia #complexneeds #hemispherectomy #parietalobe #specialcomplexneeds 1:1 Support.

We are just back from a 2 week stay to see extended family in the Malverns UK. He loves this yearly visit. The only break we get with gran & grandpa coming with us. The calmness and slower pace of life seems to be so beneficial for my son.

Attitudes towards Epilepsy.

Attitudes towards people with epilepsy are influenced, in part, by the extent of knowledge about the condition. “The history of epilepsy can be summarised as 4000 years of ignorance, superstition and stigma, followed by 100 years of knowledge, superstition and stigma”.

Sudep.

On rare occasions people die suddenly for no clear reason. When this happens to someone with epilepsy it may be called Sudden Unexpected Death in Epilepsy (or SUDEP). SUDEP is when a person with epilepsy dies suddenly and where no other cause of death is found. It may be that they died during or after a seizure.

CBD Oil. Epidiolex.

We were turned down by the Pharma Company recently even on compassionate grounds. Hopefully it will be a licensed by end of year or early into next year. Many people need this further input for the 30% whose seizures are not controlled by the AED'S presently. My take is you cannot issue a license to the minority when there are many more in the UK who could benefit from the cbd oil and the Epidiolex.

Epilepsy Awareness 

We all really need to get Epilepsy Awareness out there globally realtime. It's simply appalling that the ignorance and the stigma still prevails towards Epilepsies. Realtime Media intervention and focus is so much required. It's time to educate everyone on this Neurological condition affecting millions of people globally.

Transition to Adult Services.

We are entering into Adult Services a new Era. One which is going to carry it's own contraindications. Let's see what transpires the next few months?

Weather 

When the weather is really warm keep cool. Cold drinks, fans and wet cloths. Heat can be another trigger of seizures. Stay inside and out of the sun between 11am and 3pm when the sun is at its hottest.

Failures are not acceptable.

Everyone should know about Epilepsy in the 21st century. The ignorance and complacency isn't adequate anymore. All emergency services should at least be able to identify a seizure! Know this person isn't drunk or acting silly. Too many fatalities on individuals being restrained whilst in seizure. Wrong

Wrong

Wrong

Education is the key to knowledge. Learn everyone.

Julie x