Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Hi Min What Maree says is so true. Over the years I have met nearly 20 people with BPES. Some have had surgery soon after birth, a couple have never had surgery. It all seem to depend on the the assessment that the specialist makes. I known that they take measurements, and also do special eye tests. Added to that, it depends on how your daughter seems to cope now. You may find it useful to look here: http://www.emedicine.com/ent/topic97.htm and here: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=12648048 & dopt=Abstract here is the abstract: (it was written in 2003) Blepharophimosis: a recommendation for early surgery in patients with severe ptosis.Beckingsale PS, Sullivan TJ, Wong VA, Oley C.Eyelid, Lacrimal and Orbital Clinic, Royal Children's Hospital, Brisbane, Queensland, Australia.PURPOSE: To determine the optimal age for surgical correction of blepharophimosis. Associated features and their effects on incidence of amblyopia were also investigated. METHODS: The study was a retrospective case series of 28 patients with blepharophimosis, ptosis and epicanthus inversus syndrome presenting to a tertiary referral eyelid, lacrimal and orbital clinic. RESULTS: Amblyopia was present in 39% of patients. Patients with coexistent strabismus had a 64% incidence of amblyopia compared to 24% for those without strabismus. Hypermetropia was present in 43% of patients and 7% were myopic. Significant astigmatism was found in 40% of patients, but these factors did not increase the risk of amblyopia. Patients with severe ptosis had lower rates of amblyopia than those with moderate ptosis but had their ptosis corrected at a median age of 2 years compared to 5 years for those with moderate ptosis. There was an 18% incidence of nasolacrimal drainage problems. A good to excellent cosmetic outcome was achieved in 86% of patients. A positive family history was noted in 75% of patients, usually with paternal inheritance. CONCLUSIONS: Patients with blepharophimosis have a high rate of amblyopia. Co-existent strabismus doubles the risk of amblyopia. Ptosis alone causes mild to moderate amblyopia only. Patients with severe ptosis should have their ptosis corrected before 3 years of age, and all other patients should undergo surgery before 5 years of age. I hope that these may help you and your healthcare advisers. Take care, Shireen -----Original Message-----From: chinagal46 [mailto:gourley@...]Sent: 16 September 2004 07:36blepharophimosis Subject: blepharophimosis Re: Love this group!-Welcome to the group Min!Looking back through the messages will help you a lot as to how to help your child cope with BPES. I have BPES & also my 18yr old daughter (only us in the whole family) I had some surgery as a baby & then again when I was 15yrs old (my choice) has only had surgery as a 13yr old & will have some more soon. It depends a lot on each childs specific needs as to when the doctors decide what they should do & at what age.keep affirming your child as she is - special, unique & gorgeous - but not perfect because nobody is! And what is `perfect` anyway? Talk to your child about how people have different shaped eyes, noses, ears etc & that is a good thing to do with their schoolmates as well.Bye for nowMaree-- In blepharophimosis , "minnielin202" <minnielin202@y...> wrote:> Hi Everyone,> I recently found this group and I am thankful that there are several > people with BPES. My daughter (6mo) and I have BPES. My father and > 2 older sisters have BPES. I am Korean and it feels good to see > that non-Asian family have this trait.> > I'm looking for someone who had their child go through the eyelid > surgery...the "sling" surgery. My doctors are suggesting that my > daughter go through with the surgery at a young age and I am not > comfortable with it. I had my surgery at age 7 and I wished that my > parents didn't do that, as I grew up thinking that I am ugly and > having small eyes is a problem. > > As parents out there, how do you cope, raise your child to think > he/she is perfect and DOES NOT have a problem when they undergo > surgery several times? I would love to learn your experiences and > how your children grew up with confidence. How do you handle kids > teasing your child in school?> > Thanks,> Min Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2004 Report Share Posted September 17, 2004 Min, I am from The Bay Area! E-mail is Noonnaanay@.... E-mail me and tell me where abouts in the Bay you are from. Quote Link to comment Share on other sites More sharing options...
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