Ambiguous Epilepsy. The inconsistent advice given.
Just had very interesting conversation with an Epilepsy Nurse. Regarding Lewis seizures and ambulance call out on Saturday.
Everything I know, learned and been informed about over the years, just been launched out of window 'so to speak'
The inconsistent advice given is just so ambiguous to say the least.
I stand my ground. I challenge what they say. I ask questions.
What about those who do not!
Been in this world of #epilepsy too long. Know my Son. Know his needs and what has to be done.
We need oxygen at home. Well you would think asked for million £'s.
The drugs need increased I'm told.
No they are not as he's on high doses as it is...!
The rescue medication given buccal.
Give it nasally they say.
They forget he takes vast reaction to it given nasally...!
I'm more than willing to deal with Lewis at home as much as possible. Without having to ring 999.
They will phone me back. As asked for Neurological intervention from Clinician.
Welcome to my world of Epilepsy. It's more than just a seizure it's a life changing, life threatening condition, affecting individuals like my Son and families lives terribly.
To be continued...💜
Nothing is more painful than watching someone at the end of their life because of cancer. Trying to look good, but after chemo and radiation ... you know the person is physically changed and they're in shock!! I know many of you do not give a hoot about this message because, of course, the cancer has not touched you. You do not know what it's like to have fought the fight or had a loved one who leads a battle against cancer. For all the men and women I know, I ask you a small favor and only some of you will do it... If you know someone who has led a battle against cancer, still struggling or who passed, Keep up the fight, the awareness.
Now, how is the same precidence and Media attention not seen for Epilepsy ? It's a fight and it's a battle. Test after Test. Investigation after Investigation...... it's painful for loved ones to watch the persons body distorted and twisted, feeling powerless. It's a life threatening condition also.
So I ask all of you please help bring Epilepsy into the 21st Century. It's affecting millions globally and it's been ignored for too long.
Stomp out Epilepsy!!!!!! 💜