Total disapointment is all I can say.
Eddie went through all his symptoms to the neurologist, who said the same as the Neurosurgeon - basically that they didnt want to risk surgery as they cant be sure that the thinning of the ventricle is the reason for the symptoms. So they still havnt found a cause. Back to square one.
He is however being referred to a Headache Specialist to try and help him deal with the pain. This wont help his vision problems, judgement problems, balance problems or anger issues. Hes to be referred to the Mental Health Team for assesment, so basically they think all of his problems are nothing to do with his scan results.
I feel like they are just passing the buck onto other specialists, but no-one is giving us answers.
Not sure where to go from here, or even if there is a route to take :(
Saturday 21 November 2009
Dada...
Being so hormonal and emotional is not helping me deal with things right now.
Yesterday in the car Eddie took an episode and was slumped in the back beside Brodie. She was looking at him saying 'Dada' but obviously he wasnt able to respond. She looked at him confused and repeated saying 'Dada' with still no reply.
Looking at her little face, wondering why Daddy was ignoring her broke my heart. I ended up crying. This is when I realised that this is the way things are going to be, and I have to help our children deal with this as they grow up.
Sometimes im not sure I can even deal with it myself, never mind helping the kids deal with it and then ofcourse helping Eddie.
No-one seems to be doing anything. Eddie is unwell, why isnt anyone doing anything?
Hes missing out on prescious moments with his Daughter, moments he can never get back. And with his condition getting worse, and new baby due in March...how much is he going to miss out?? Will he even be able to stay awake when the baby is being born? will he miss it?
Yesterday in the car Eddie took an episode and was slumped in the back beside Brodie. She was looking at him saying 'Dada' but obviously he wasnt able to respond. She looked at him confused and repeated saying 'Dada' with still no reply.
Looking at her little face, wondering why Daddy was ignoring her broke my heart. I ended up crying. This is when I realised that this is the way things are going to be, and I have to help our children deal with this as they grow up.
Sometimes im not sure I can even deal with it myself, never mind helping the kids deal with it and then ofcourse helping Eddie.
No-one seems to be doing anything. Eddie is unwell, why isnt anyone doing anything?
Hes missing out on prescious moments with his Daughter, moments he can never get back. And with his condition getting worse, and new baby due in March...how much is he going to miss out?? Will he even be able to stay awake when the baby is being born? will he miss it?
Wednesday 4 November 2009
Neurologist Appointment
Eddie got his appointment letter through to go back and see the First Seizure Clinic and discuss his symptoms with the Neuroslogist who first requested his MRI.
Hopefully he will be able to do more to control the symptoms hes having, which are getting worse everyday. He was really good the last time, taking the time to explain everything...so looking forward to getting some answers.
Wish him luck! xxx
Hopefully he will be able to do more to control the symptoms hes having, which are getting worse everyday. He was really good the last time, taking the time to explain everything...so looking forward to getting some answers.
Wish him luck! xxx
Sunday 1 November 2009
Baby Number 2 - Scan results!
Well we had our 20 week scan on Wednesday, and the sonographer took lots of time over the babies ventricles aswell as everything else, and all is great!
Baby is looking plump and long, and is growing exact to dates :D We know what we are having, but not telling just yet! Going to pick a name first and then do a grand announcment like we did with Brodie :)
so as of today....baby number 2 is 21 weeks and 1 day old! yaaay!
Baby is looking plump and long, and is growing exact to dates :D We know what we are having, but not telling just yet! Going to pick a name first and then do a grand announcment like we did with Brodie :)
so as of today....baby number 2 is 21 weeks and 1 day old! yaaay!
Refused use of a Disabled toilet...for not being disabled enough
Im absolutely shocked to even be typing this...Eddie got refused use of a Disabled toilet in a Jobcentre, because he apparently 'Did not appear disabled'
He was in phoning about his Employment Support Allowance claim, and after using the phone was denied use of a disabled toilet because the manager had told the security not to allow him to use it. When he spoke to the manager, he said that the toilet was for 'people with physical disabilities' he came out to the car explaining that he had been denied use of it to me and we looked around for somewhere else for him to go...nowhere.
I then sent him back in, telling him to explain he has a brain condition, have been awarded DLA and that the manager cannot decide who is and isnt disabled. He did this and still returned bursting for the loo.
I went in myself, saying that this man was breaking the law and was commiting disability discrimination...he didnt seem fased, said it was the jobcentres policy and that he really wishes it was different, but this was the way the policy was. He even said that someone with incontinence problems (a invisible disability) wouldnt be allowed to use the toilet, and that if a man came in limping he would automatically get use of the toilet 'unless he was signing on, because if he was disabled he would not be job seeking'!!!!
I left really angry and annoyed at this twat! First he claims my partner is not disabled enough for use of the toilet, then he states its the jobcentres policy and not his personal view, then he claims disabled people wouldnt be looking for jobs?! and this is the manager?!?!
Im totally dissapointed that this uneducated man is left in charge of a jobcentre and caused so much upset and stress for Ed. Hes finding it hard coming to terms with his disability, and just because he doesnt 'look disabled' doesnt mean he is not! He suffers a lot of physical difficulties which arnt as obvious, such as leg, joint & muscular pain, difficulty controlling limbs and at times total loss in the control of his limbs.
I have sought advice on the matter and have taken it to my local MP aswell as Disabled charitys because of the breach in DDA.
Will keep you posted on the outcome!
He was in phoning about his Employment Support Allowance claim, and after using the phone was denied use of a disabled toilet because the manager had told the security not to allow him to use it. When he spoke to the manager, he said that the toilet was for 'people with physical disabilities' he came out to the car explaining that he had been denied use of it to me and we looked around for somewhere else for him to go...nowhere.
I then sent him back in, telling him to explain he has a brain condition, have been awarded DLA and that the manager cannot decide who is and isnt disabled. He did this and still returned bursting for the loo.
I went in myself, saying that this man was breaking the law and was commiting disability discrimination...he didnt seem fased, said it was the jobcentres policy and that he really wishes it was different, but this was the way the policy was. He even said that someone with incontinence problems (a invisible disability) wouldnt be allowed to use the toilet, and that if a man came in limping he would automatically get use of the toilet 'unless he was signing on, because if he was disabled he would not be job seeking'!!!!
I left really angry and annoyed at this twat! First he claims my partner is not disabled enough for use of the toilet, then he states its the jobcentres policy and not his personal view, then he claims disabled people wouldnt be looking for jobs?! and this is the manager?!?!
Im totally dissapointed that this uneducated man is left in charge of a jobcentre and caused so much upset and stress for Ed. Hes finding it hard coming to terms with his disability, and just because he doesnt 'look disabled' doesnt mean he is not! He suffers a lot of physical difficulties which arnt as obvious, such as leg, joint & muscular pain, difficulty controlling limbs and at times total loss in the control of his limbs.
I have sought advice on the matter and have taken it to my local MP aswell as Disabled charitys because of the breach in DDA.
Will keep you posted on the outcome!
Monday 26 October 2009
Eddie got his DLA
After months of appeals, letters, doctors reports and form filling, Eddie finally got the news that he had been awarded DLA.
For once...someone had recognised his struggle. It isnt the award we were told to expect, but it is something.
I think its going to be hard for Eddie to get used to saying he has a 'Disability' and adapting his life round his disability is going to be hard to do.
As his symptoms get worse almost daily, I can see us having to contact DWP alot in the coming months.
At least he can look forward to spending his backdate!
For once...someone had recognised his struggle. It isnt the award we were told to expect, but it is something.
I think its going to be hard for Eddie to get used to saying he has a 'Disability' and adapting his life round his disability is going to be hard to do.
As his symptoms get worse almost daily, I can see us having to contact DWP alot in the coming months.
At least he can look forward to spending his backdate!
I asked the questions they didnt answer
I got fed up of not knowing and emailed the consultants secretary on Eddies behalf for some answers.
He wrote to Eddie and confirmed that what I had thought Eddie has was correct, Hydrocephalus due to stenosis of the aqueduct of sylvius and that it was congenital.
He said that Eddies symptoms were not typical of that of hydrocephalus and because of this and the fact his ICP was normal, surgery was not an option, and instead he was being referred to a neurologist. He did not know why his symptoms have worsened.
It made me angry, if his symptoms are not typical of that of Hydrocephalus, what are they? They have done one MRI scan, do they know if the passage had thinned further? And if his symptoms are not typical of Hydrocephalus then why are those symptoms directly related to his condition on thousands of websites and doctor research sites?
Could the passage thin completely? According to many doctors reports and (it shivvers my soul to say it...) pathologist reports...yes, and if it thins too much or blocks completely, my daughter is going to loose her Daddy.
Why wont they do something???
He wrote to Eddie and confirmed that what I had thought Eddie has was correct, Hydrocephalus due to stenosis of the aqueduct of sylvius and that it was congenital.
He said that Eddies symptoms were not typical of that of hydrocephalus and because of this and the fact his ICP was normal, surgery was not an option, and instead he was being referred to a neurologist. He did not know why his symptoms have worsened.
It made me angry, if his symptoms are not typical of that of Hydrocephalus, what are they? They have done one MRI scan, do they know if the passage had thinned further? And if his symptoms are not typical of Hydrocephalus then why are those symptoms directly related to his condition on thousands of websites and doctor research sites?
Could the passage thin completely? According to many doctors reports and (it shivvers my soul to say it...) pathologist reports...yes, and if it thins too much or blocks completely, my daughter is going to loose her Daddy.
Why wont they do something???
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