Re: questions to ask - to Steph and Ali

[Guest guest]

Hi Steph welcome to the group. I am Clare and my daughter is Emy - Hertfordshire UK. We both have BPES. We both have had operations done by Mr Collin at Moorfields eye hospital in London, and what you have described in the procedure is the second operation we both had. I have through experience from the website found that all cases need to be taken on their own as it can and often does differ from person to person. My daughter emy had her operations at 4 and a half and 5 yrs old - with 6 months between them. The first she had the skin fold reduced that covered the corners of her eyes for the first op, and then (as we didnt have eyelid muscle's ) had the muscle tissue taken from her leg and attached to the inside of the eyebrow muscle and the top lid - to make a kind of lever. This is in our case the muscles in the eybrows opened the eyelids and took over the work that the eyelid muscle would have done

if it were there. Then within the 2nd op they stiched a crease into the eyelid. She looks fabulous - actually quite amazing really. This procedure was what I had done too however over 20 years ago. Does Ali have BPES (the folds of skin in the corners and the 'droopy' eyelids with no crease). Please feel free to contact me and others from this group if you have any more questions. Im happy to share our experiences with you, as information is the best form of support and acceptance. Regards clare teale Herts UKsodiq <other.sodiqs@...> wrote: Hi! We have a son, Ali, who will be three in May. He was diagnosed withBleph in

December 2003, in Leicester. Since then we've seen a consultantabout three or four times and had lots of 10 minute eye appointments withopticians etc. His vision is normal for his age and he is developingnormally although he does sometimes seem to put his chin up and head back tolook upwards. I still feel a little in the dark about the future treatment for Aliand have a long list of questions for the consultant, who we are seeing inMarch. So far we have been told that Ali will need an operation takingtissue from his leg and knitting it into the area under his eyebrows, whenhe's about four years of age. I have recently read that this may depend onhis leg length because of the amount of tissue that may be needed, doesanyone know if this is correct and can anyone suggest any questions that Ishould be asking at our next appointment?Thanks,Steph Sodiq