12th February 2015

12. Feb, 2016

Have things got any better from a year ago? No they have not..Still going through the turmoil of trying to get this quality of life concerning Epilepsy for Lewis.

 

12th February 2015 

Been at Hospital today with Lewis originally for new left leg brace.

Because seizures recently have been troublesome, inbetween appointment went and sought advice again at Neurology.

Feeling bit deflated whilst yes we were seen by another Paediatric Neurologist & Epilepsy Nurse. Looking around at other kids you see how the AED's affect each child differently. THE LACK of Specialism's and Epilepsy Nurses! There are just not enough at all in Hospitals.

There is always a reason to why this one and that one not available for consultation.

The deficit and the lack of Epilepsy Specialists in my view is far worse than even 10 years ago.
These kids and young adults with Epilepsy and other related conditions suffering with Epilepsy are being so failed.  

Yes seminars and other Epilepsy conferences need to be attended. But does anyone actually learn anything more than they tell you.

Are drugs always the right way to go with the contra-indications and toxicity levels in children?

Some dispute the effectiveness of Epilepsy Alarms.
If a family feels it is beneficial and takes some pressure from them, who is anyone to deny this.

Charities supply these not NHS and I know of a very great one who works so hard to supply families with Alarms.

Nocturnal Seizures and Intractable Epilepsies hard to control by medications, maybe get some benefit from Surgery.

The fact is this Neurological Condition has been around for hundreds of years. Epilepsy is not a new condition and it does not discriminate. It is the least known about illness and least underfunded.

The Brain is the most complex organ in body.

The stigma attached to Epilepsy maybe a little better, but not much.

If we can put a man on the moon! Why can we not cure or at least understand Epilepsy better.

Research is so much needed by Scientists and Professionals with funding being made available.

How far have we really come from all those hundreds of years ago in obtaining a cure for Epilepsy?

Julie Clark