9. Feb, 2019

February 2019

Hi all,

It has been a few months since wrote anything. There was Christmas inbetween all the hospital appointments and transitioning to Adult Services. Let me say this, it’s no mean fete. It’s draining and drawn out. You expect the continuation from paediatric services to continue...onto Adulthood.

Our children don’t go from Paediatric services to Adulthood services and all the lifelong medical issues some others would have you think disappear. I wish.

You’re up against the ambiguity of others. It’s like all you done previously for your child gets kicked to kerb.

You’re questioned.

You’re called an overprotective parent.

You’re demeaned as a parent.

You’re persona as a whole is scrutinised.

Everything you’ve done for your child previously questioned by others.

Well, I’ve done it right up until now. The decisions I've made, I've made to the best of my ability for my son.

What’s going to change now he’s an adult. Groundhog Day carries on as usual.

Nothing changes because now he’s an Adult. Don’t presume he’s more capable than he is.

Guardianship process, got slated. Who trains these people in Complex and Special needs. Frameworks do not work for all. How can it especially with Epilepsy, every person with seizures different. I don't appreciate getting questioned on my ability to care for my son by a Local Authority Mental Health Person who was once a Social Worker.

My Son needs help with Welfare and Financial concerns always. Yes, let him make as many decisions as possible. But let me be brutally honest here, he’s vulnerable in a non empathic world. He cannot always express himself correctly and say what needs to be said.

Last weeks Neurologist appointment, first in Adult Neurology. It was fine, we had to start from beginning...  Discussed all the options of refractory epilepsy. Adding more Aeds unlikely to have any effiacy. The CBD Oil still only for Dravet and Lennox-Gastaut Syndrome. So much red tape with regulating bodies.

So, to date we carry on regardless in this world of Epilepsy. Appointments here and Appointments there. Adult Disability teams now in place. Nurses, Psychology and Disability Social Worker. Everything’s just ticking along day by day, that’s all we can do.

Epilepsy has been our world, my sons world for 19 years now. Has it got any better, the stigma, the ignorance of others on Epilepsy and Seizures? A big emphatic No in my view.

Epilepsy affects everything in a persons Quality of Life, especially with uncontrolled seizures. Workplace, socially, isolation and depression to list a few aspects of Epilepsy.

I say to others whom come into our home for 20 to 30 minutes. You don’t know us, you don’t know the impact of the untold story of Epilepsy in our family and of my Son. Don’t go for me or criticise my care. I will come back at you tenfold. You know my name but not the journey we've been on and still on.

My sons QOL will always be priority. He’s excelled in so many ways having acquired brain damage due to Epilepsy...His voice and advocate I’ll always be. 

Epilepsy so needs brought out of the dark ages and into real-time focus. Do others really understand the true nature of how seizures affect the person and their families. I’ve seen thousands of these seizures, I never get used to them. They are violent and a horrible insult on the persons body.

Global Epilepsy/Purple day end of March. Let’s all get Epilepsy Awareness out there Globally. This message has to get out there. The ambiguity and ignorance of perceptions people have of Neurological conditions just not acceptable.

If you make fun of seizures, you are being ignorant. There are people in this world who can have up to a hundred seizures per day. Think about those people who live with anywhere from 20-100 seizures per day the next time you decide to crack a seizure joke.

Thank you,

Julie x

 Cortical Dysplasia

Focal cortical dysplasia (FCD) is a congenital abnormality of brain development where the neurons in an area of the brain failed to migrate in the proper formation in utero. Focal cortical dysplasia is a common cause of intractable epilepsy in children and is a frequent cause of epilepsy in adults.

This was missed on my Son's 2000 MRI Scan by a Radiologist.