#6
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Hey hun, you mentioned bch, you in birmingham by any chance!? Were regulars there lol but on another note, have you thought about perhaps contacting someone from great ormond street hospital? They seem to deal with a lot of things that are either too complex or baffle other uk docs. Also, have they ever looked into any genetic cause?

Lucy xx
#7
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hey,nope we live in bridgnorth lol..yea they have checked for genetic disorders etc..(i dont know the names) my mom has got a copy of all of Ryans files from the hospitals which i could do with but when u dont talk its proving quite hard! a friend said to contact great ormond street but how do i go about that? who do i call or write to? we once saw a neurologist in london and apparently he was the best about..his names on the ti of my tongue!lol x
#8
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Well if you want a copy of all his notes you can request them through a data protection release, if you want to contact GOSH perhaps take a look on their website, I have no experience in this but if it where me, I'd maybe pick a few departments I normally see like neurology or whatever and email them your predicament, I'm pretty sure they must have a lot of people do the same. Or you could phone the swithcboard and ask their advice, really, I think a lot must do it! Perhaps if you have a general community paed you see they might be able to rfer you over but I think if you don't know what department your after th might be abit hard. I think I'd start with getting your sons notes and emailing lots of people at GOSH Smile sorry if I'm waffling, tiredness xx
#9
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Just as a side, the genetics they know about are really new. My friends have been told that they don't know now yet, but they will re test in 3 / 4 / 10 yrs and they might know by then. Every day they are finding new things so it might be a case of waiting and having more genetic tests.
As for referal to Great Ormond Street, ring their switchboard definatly, but I would see my community paed, basically they can refer anyone just by writing a pp at the bottom of a letter. Whether they can do this for Great Ormond I don't know, but worth asking.
I wish you luck. Keep us posted.
#10
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The thing i would suggest is asking for a copy of the notes and asking for the data protection release ill get a template for you if you wish.

Secondly ask your doctors to refer on to either Great Ormond Street childrens hospital as i believe you would stand a good chance of finding out here.



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