andywhybrow
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Hi All,
I am very new to this as my 3 year old son was diagnosed with Epilepsy in May 2008.
I am writing this post as I have taken so much info on board I just feel like I will burst at anytime.
Please can anyone offer advice?
My son is getting worse after diagnosis, he was rushed into hospital in May after suffering repeated seizures and had an EEG. He was immediately diagnosed as the brainwaves showed plenty of activity. He was prescribed Epilim (soduim valporate)
The consultant with whom I have every faith in and thats quite rare to say in a British NHS hospital, diagnosed him as having "absences"
Since then my son has been awaiting an MRI scan and has it tomorrow 23/10/08.
He has been getting steadily worse, here are some of the symptoms:
Drew has become an aggressive, angry young man
Drew is having seizures where his arms and fingers noticeably twitch.
Drew has seizures when standing up and just stops whilst twitching then needs to sleep immeditely afterwards.
Drew is losing the ability to communicate, others, with exception of my wife, 5 year old son, 16 year old brother, cannot understand him when communicating.
Drew has started to appear as though he is "drunk" when walking
Drew has twitching bouts during the night when asleep and has terrible night tremors.
Drew has to "fumble" or "fiddle" with things, such as buttons, action figures (he has to chew the limbs) and collars of his shirt.This appears as though he cannot stop himself.
The consultant is seeing him on the 24/10/08 as he wants to read the MRI scan and decide on a course of action etc... and the GP saw him this afternoon for approx 1hr and stated that she felt that the Epilim was not controlling the Epilepsy at all and that he does not only suffer what was first diagnosed as absences. She noted that he has difficulty focussing on simple tasks and his behaviour has changed.
I am absolutely petrified of what I will encounter tomorrow and have to face this journey with Drew alone as mum cannot cope at all. She can no longer face what the consultants are throwing at us and is as scared as me of what we may have to face.
I am a strong person, but I am terrified at what the consultants are searching for and cannot rest or sleep through fear of tomorrow.
Is it possible that what I am describing is Epilepsy and nothing more sinister/
I have not tried to research the symptoms as I know I will encounter many "horror" stories and I am determined that if my son has Epilepsy, he will live as much as a normal life as others and just make adjustments to reinforce that.
I just have no idea if what I am describing is Epilepsy and although I will have confirmation in 24 hours after his brain scan, I am so scared, I dont know what to think anymore... this is the most frightening 24 hours of my life.
I am very new to this as my 3 year old son was diagnosed with Epilepsy in May 2008.
I am writing this post as I have taken so much info on board I just feel like I will burst at anytime.
Please can anyone offer advice?
My son is getting worse after diagnosis, he was rushed into hospital in May after suffering repeated seizures and had an EEG. He was immediately diagnosed as the brainwaves showed plenty of activity. He was prescribed Epilim (soduim valporate)
The consultant with whom I have every faith in and thats quite rare to say in a British NHS hospital, diagnosed him as having "absences"
Since then my son has been awaiting an MRI scan and has it tomorrow 23/10/08.
He has been getting steadily worse, here are some of the symptoms:
Drew has become an aggressive, angry young man
Drew is having seizures where his arms and fingers noticeably twitch.
Drew has seizures when standing up and just stops whilst twitching then needs to sleep immeditely afterwards.
Drew is losing the ability to communicate, others, with exception of my wife, 5 year old son, 16 year old brother, cannot understand him when communicating.
Drew has started to appear as though he is "drunk" when walking
Drew has twitching bouts during the night when asleep and has terrible night tremors.
Drew has to "fumble" or "fiddle" with things, such as buttons, action figures (he has to chew the limbs) and collars of his shirt.This appears as though he cannot stop himself.
The consultant is seeing him on the 24/10/08 as he wants to read the MRI scan and decide on a course of action etc... and the GP saw him this afternoon for approx 1hr and stated that she felt that the Epilim was not controlling the Epilepsy at all and that he does not only suffer what was first diagnosed as absences. She noted that he has difficulty focussing on simple tasks and his behaviour has changed.
I am absolutely petrified of what I will encounter tomorrow and have to face this journey with Drew alone as mum cannot cope at all. She can no longer face what the consultants are throwing at us and is as scared as me of what we may have to face.
I am a strong person, but I am terrified at what the consultants are searching for and cannot rest or sleep through fear of tomorrow.
Is it possible that what I am describing is Epilepsy and nothing more sinister/
I have not tried to research the symptoms as I know I will encounter many "horror" stories and I am determined that if my son has Epilepsy, he will live as much as a normal life as others and just make adjustments to reinforce that.
I just have no idea if what I am describing is Epilepsy and although I will have confirmation in 24 hours after his brain scan, I am so scared, I dont know what to think anymore... this is the most frightening 24 hours of my life.