Re: Our 4 month son was just diagnosed with BPES

[Guest guest]

When our son was 5 months old (he's now 24 months) he was diagnosed with BPES. After taking the time to search, meet and interview several surgeons we scheduled surgery which was performed at 10 months of age. Many participants in this group shared their personal stories with me and assured me that their children were resilient following the surgery. This, of course, is hard to imagine but it turned out to be true in our case as well. Our son slept most of the first day of surgery and experienced a loss of appetite for a few days, but was otherwise completely unphased (or apparently so) by the surgery. We actually had to have surgery performed on the right lid again at age 19 months because it still was not clearing the pupil and no one can tell at all that he's had surgery. The scars just aren't there.

Keep us posted.

-------------- Original message -------------- From: "eldermarky" <eldermarky@...>

Dear Everyone,Our 4 month old son, ph, was just diagnosed with BPES by our pediatric ophthalmologist. He is scheduled to have surgery this next Thursday, August 31st and we are really nervous. This condition does not run in either of our families and we have no experience with it? We worry about him having surgery (he is 6 months old) scaring, and recovery. If any of you had a child with this condition that had surgery this young, please email us at eldermarky or call us at 801-378-4833 to give us any tips on the first gortex sling surgery or your opinion on if we should wait for the surgery. We are also seeking advice on genetic testing (when, with whom, how, does insurance cover it?). From the posts I've read, this seems like a great group to be involved with.