Would you do it over again?


#1

My five-month old son was just diagnosed with Bleph yesterday. My husband and I are trying to decide how to help him. For those of you who have passed this milestone, would you do anything different if you had the chance? What is best- earlier or later procedures? Do earlier procedures have to be redone later?


#2

I went twenty years without one single doctor or even OPTOMETRIST telling me one thing about my eyes.

You need to talk to an eye specialist, a doctor that is actually informed about the subject and has information to give you that is objective.

There are many different conditions that bleph can cause. Im very lucky because other than my eye shape, i have no medical problems at all.

Personally, unless your doctors have a predominant reason for operating on your child, i wouldnt do it. I would give it some time.

Im 20 years old, have the same range of vision as anyone else despite outside appearance. I have a driver’s licence, and the only reason i have glasses is an astigmastism in my left eye :wink: (i barely wear my glasses either, lol)

If your child is suffering, or your childs eyes are covered so much that the doctor says there is a chance they could go blind, i would of course operate. (and there are obviously various other more intense side effects.)

I just want to be the voice out there letting you know that sometimes bleph causes horrible effects, sometimes there are none, and doctors, although wellmeaning, may not have any good PERSONAL advice for you. This type of thing frightens people. A lot of people will push you to get surgery to “normalize” your child, because its the “right” thing to do.

A lot of my extended family has bleph: my grandmother, my aunt, both of my aunts children, my aunts child has a child with it. My uncle had it, and two of my grandmothers sisters had it. My dad had it. Its a genetic thing.

I know that sounds freaky and weird. I just want to say keep an open mind, be patient, rome wasn’t built in a day.

It takes an entire life to get to know yourself, so just be conscience of the fact that you have the ability to change your child before they have a say in it.

Remember, go see an EYE SPECIALIST. Trust me, not all doctors know what they are talking about. If i can go an entire LIFETIME without being diagnosed, be careful! I dont know if im doing a good job of being articulate and fair, but im trying really hard to convey that you have to be wary, make sure you are talking to someone who is well informed and understands the medical issues as well as social/emotional issues.

I wish you guys the best of everything and im thinking about you.

----Melissah


#3

My son is 15 months old. We got very lucky in that our ped sent us to an eye specialist right away. He was diagnosed and had the sling surgery at 2 months. Keep in mind that with us there was no choice. Aden could not see. he also would tilt his head back to try to see out of the slit in his eyes. That is all his eyes would open just a little slit. Taking him in for his surgery was the hardest thing I have ever done. It seemed like it took forever & when he finally came out of surgery I was heartbroke. I at one point asked my husband did we do the right thing, knowing that we had no choice. If we would not have gotten the surgery Aden would have went blind. Now I can say it was such a blessing he doesn’t miss a thing. Yes he still has little eyes the surgery we had was not cosmetic it was strickly medical! The only diffrence it made in his appearance was that now you can see his beautiful blue eyes and the most important thing, He can see everything!!! Our Dr has said that he will have to have additional surgery’s in the future as the slings will eventually give out and have to be replaced. I choose to put my faith in God and will take it one day at a time and today I can say we went to the Dr and all is wondrful. I would say the 1st thing is to find a specialist ask around to people on the web as to doctors in your area. I am in Indiana and I can say Dr. Plagger at Riley hospital is the best. In fact you may even call his office and ask if they can refer you to someone in your area. His # is 317-274-8103. I send my prayers to Kaden & the rest of your family!!! Please let me know if you have any questions or just want to talk. God bless you!!! Carla


#4

my son has bleph, he is now 5. he has had 3 surgeries, each one left him in better shape and saved him from losing his sight. i thank God that i live at a time where these surgeries can be done.