New Member: My 5 month old has micropthalmia - any advice

[Hopeful Mommy]

My daughter was diagnosed at 1 month. The doctor said to come back in one year. She said we didn't need a prosthetic unless we wanted one. I was on the internet reading about "conformers" to further enlarge the eye socket. Should I go to another doctor to ask about conformers? Also, my daughter might have partial vision in her bad eye. Has anyone put a patch on the good eye to improve vision in her bad eye (I read that on the internet as well)? Any advice? I am so glad to know about this message board. Also, any general advice would be appreciated, as well.

[Sarah]

Hi,

Our daughter has left micro/phpv and has been wearing scleral shells since 4 months old. I don't know if it depends on the size of the micro eye to start with as to when they start these.

I personally would investigate further about if your daughter could need and have them now, as some children I have met have had them as young as 6 weeks. I have been told the earlier the better.

http://www.violetsjourney.blogspot.com

[Addon27]

In regards to your daughters micropthalmia eye, the first thing to understand is how much smaller than her non-micropthalmic eye is her eye. I believe that the micropthalmic eye is 80% the size of the non-micro eye. You and your healthcare provider than need to look at you daughter to determine what other facial asymetry there is. My daughter was born with her her right eye measuring 16mm and her left eye 6mm. The concern was that she would not have facial symmetry. The most important time to help this facial development is early in the growth of the infant because they are still developing at a rapid rate compared to even months down the road. What type of physician have you been discussing your daughter's condition with and where do you live? :)

[Hopeful Mommy]

Addon27 - thanks for both of your replies. I live in Houston, TX. I now have an Ocularist appointment this Friday (there was a cancelation or I would have had to wait 3 more months). I am not sure the difference in size. It is not totally noticeable, only at certain angles and if you know something is wrong it is noticeable. I will see what the doc. says. By the way - in your other thread you said that my daughter may qualify for some intervention help, do you know who I contact for that? Also, what type of prosthetic does your 4 year old daughter have, and do you have her wear protective glasses as well to protect the good eye? And if you do, what age did she start keeping those things on? Thanks again for all of the info!

[Jodi]

Hello Hopeful Mommy
Did you see a pediatric ophthamologist? If you are not comfortable with the doctors suggestion, it's best to seek a second opinion. If you look on the "general info." section of this website you will find medical recommendations. Hope this helps. Good luck and enjoy your 5 mo old!!
Jodi, mom to Wyatt, 8 yrs old, SOX2 anophthalmia syndrom

[Hopeful Mommy]

I had a great visit with Dr. Marcus Supor in Houston Texas (Ocularist). I looks like my daughter will not be needing conformers right now. I did find out that in regards to another post (I will post this info there too) that an eye should never be removed or enuculated (spell?) unless there is pain or disease, never because of the prosthetic.
Thanks for all the info from everyone.