Latest hospital appointment for beth - Not good this time at all

I really feel for you. my little boy is nine months old and he has little spasms that the doctors say aren't anything to worry about, but doctors always say that :-(
 
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
 
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.
 
Thank you one and all for your comments its greatly appreciated

knip said:
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
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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
 
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. :(
 
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)
 
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.
 
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