alison24
9 posts
Jan 26, 2010
1:02 PM
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Hi, my 4yr old, Mason was diagnosed with aggressive coats disease in 2008. He has always been seen at the QMC Nottingham by Mr Stokes who has now unfortunately left the hospital and has not yet been replaced. In sep09 we discovered Mason had a cataract in coats eye with a high level of imflammation and was told he would need regular appointments to keep a close eye on him! We attended the QMC today and saw a temp doctor who appeared to have no idea and basically didnt seem interested. I am not entirely happy and NEED to find another doctor elsewhere with some experience of coats who can give us expert advice.Please can anyone recommend a consultant in the UK to us!!!!
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Dunc & Frank
20 posts
Jan 27, 2010
4:24 AM
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You could see if you can get a referal to Birmingham Children's Hospital where they specialise in retinoblastoma and Coat's. Our son was treated there by Mr Parulekkar, who is excellent. Only Birmingham and London really have the best expertise for this condition. Good luck.
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alison24
10 posts
Jan 28, 2010
12:42 PM
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Great thanks, Birmimgham was one of my first thoughts as we went there for Masons first initial diagnosis, i have made an appointment with our own GP to try an arrange a referral, hopefully he will be willing to help. Whereabouts are you from by the way?
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Dunc & Frank
21 posts
Jan 28, 2010
2:49 PM
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Alison24,
We are from Aberdeen. Our story is on this website - if you copy and paste this address into you browser, you can see it:
http://www.coatsdisease.org/board/board_topic/2684224/435548.htm
Hope things work out for you.
Duncan
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alison24
11 posts
Jan 29, 2010
11:16 PM
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Duncan, your story is amazing and yes to pick it up so young does seem highly unusual, you and your family must have gone through hell at the time. Any way thanks for sharing it and let us hope everything also works out for you to. Take Care!
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Dunc & Frank
23 posts
Feb 24, 2010
1:56 AM
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Hi Alison,
I was wondering if you had any joy in trying to get a referal to Birmingham Children's Hospital? Either way I hope you are now getting the right support from the doctors.
All the best,
Duncan
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