Latest hospital appointment for beth - Not good this time at all
- Thread starter Skywalker
- Start date
Soldato
Heart goes out to you, don't know how you cope with a little one being poorly.
Associate
She's a cutie, looks just like my niece, it must be so frightening for her and you. I hope all the best in the future and that everything works out fine.
Mark.
Mark.
Associate
So sad to hear about this happening to anyone, but especially when its someone young. Hope everything goes OK for you, no matter what route you choose to take.
Caporegime
Sorry to hear this 
, such a lovely little girl you got there, hope it all works out for you with whatever you decide.
, such a lovely little girl you got there, hope it all works out for you with whatever you decide.
Soldato
Being a parent myself I can only imagine what you must be going through.
My thoughts are with you all, what a terrible situation.
My thoughts are with you all, what a terrible situation.
Soldato
Being a parent myself I can only imagine what you must be going through.
My thoughts are with you all, what a terrible situation.
Soldato
Sorry to hear about this. I'm sure you'll make the right decision but I can appreciate its tough and heartbreaking to be in this situation.
I'm sure you'll make the right decision but I can appreciate its tough and heartbreaking to be in this situation.
Soldato
Im sure you have tried this, but have you looked on the net for what the operation will involve, and where the best place in the world is to have it?
Im asking because (and im sorry to keep harping on about him) the child I look after is more than likely going to have brain surgery in the summer next year to help his epilepsy, abnormal/uncontrollable movements, and the pain he gets from all this. The best place in the country to have this type of operation is somewhat mercifuly right here where we live in Bristol.
Im not sure what Beths operation will involve, but I would do some research for yourself (if you have the name of the operation) and find out if they do do it in this country. Please dont for one second believe everything the doctors tell you, they always give you the worst case, and quite often have no idea of what else is going on in the country. Can you get a referral for Great Ormond street?
The child I look afters Mum usually ends up finding most things out via the internet, about alternatives to stuff, and/or the best place to have it.
Again (and im sure you have) have you contacted http://www.tuberous-sclerosis.org/ to see what advice they have, they must have other parents who have had similar experiences etc.
Sorry if you feel I am interfering or going on, please tell me to shut up if you want to. Again I am happy to help if I can.
Big hugs and kisses to Beth, you and your wife
x
Im asking because (and im sorry to keep harping on about him) the child I look after is more than likely going to have brain surgery in the summer next year to help his epilepsy, abnormal/uncontrollable movements, and the pain he gets from all this. The best place in the country to have this type of operation is somewhat mercifuly right here where we live in Bristol.
Im not sure what Beths operation will involve, but I would do some research for yourself (if you have the name of the operation) and find out if they do do it in this country. Please dont for one second believe everything the doctors tell you, they always give you the worst case, and quite often have no idea of what else is going on in the country. Can you get a referral for Great Ormond street?
The child I look afters Mum usually ends up finding most things out via the internet, about alternatives to stuff, and/or the best place to have it.
Again (and im sure you have) have you contacted http://www.tuberous-sclerosis.org/ to see what advice they have, they must have other parents who have had similar experiences etc.
Sorry if you feel I am interfering or going on, please tell me to shut up if you want to. Again I am happy to help if I can.
Big hugs and kisses to Beth, you and your wife
x
Soldato
She'll keep fighting no matter what they throw at her and she'll keep you and your wife going!
Whatever decision you make will be the right one because it will be what you've felt will most benefit Beth.
Thoughts are with you and your family.
Syph's Missus.
Whatever decision you make will be the right one because it will be what you've felt will most benefit Beth.
Thoughts are with you and your family.
Syph's Missus.
Soldato
my heart goes out to your little girl and your family, hope every think turns out alright 
Thank you one and all for your comments its greatly appreciated
We have been refered to kings college hospital which we have been told is the best place in the country to deal with this
We have been on the TS site since april and is very good and full of info
From what I have read the best place is in USA as they have carried out 2 operations and the first in the UK is happening in early next year
We have been refered to kings college hospital which we have been told is the best place in the country to deal with this
We have been on the TS site since april and is very good and full of info
Soldato
i was going to post a thread up moaning about some stuff going on in my life. after reading this i think i'll just shut up and count myself lucky.
sorry to hear about what you're going through. fingers crossed for you all.
sorry to hear about what you're going through. fingers crossed for you all.
Soldato
The poor little dear - I hope everything turns out OK for you & your family in the end. It's things like this that made me decide to join my local Lions Club
(if anyone here who doesn't know who Lions clubs are, please do a search if you are interested in doing volunteer work in your spare time)
(if anyone here who doesn't know who Lions clubs are, please do a search if you are interested in doing volunteer work in your spare time)
Soldato
Sorry to hear about your daughter
I hope things work out well for you, Good Luck.
I hope things work out well for you, Good Luck.
Associate
I remember your earlier thread, and my wife and I were both very moved by it. I'll ask the misses if she has any info about it, but it sounds like you're doing the best for Bethany by finding out all you can. It is good she has you in her corner.
Best of luck, and all my hopes.
Best of luck, and all my hopes.