ptosis

Andrea - posted on 02/21/2011 ( 8 moms have responded )

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Hi! My name is Andrea, my father and I and now my son have all been born with ptosis of both eyes. My son is 21 months and I am looking for a good surgeon for him. I live in Florida and would greatly appreciate any help :-)

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Kristy - posted on 08/10/2013

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Hi everyone, I am new here. My baby girl has congenial ptosis in both eyes, she is 9 mos old. I am so scared and worried for her surgery when she turns one. I am worried about the scaring after wards and when she gets older, I my self was teased and bullied terribly when growing up and still to this day and I am 31 !!!!

I know it's been years since my surgeries and so much has changed in the procedures for ptosis I am hopping for less scaring for my daughter sake.

Tracey - posted on 03/11/2012

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Have you had surgery yourself? I live in England so am no use to you in answering your question!

Maria - posted on 01/31/2012

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My son had his surgery at 7 months. His bilateral ptosis was so bad that he couldn't sit up because he had to keep lifting his head to see. I was amazed how quickly he recovered and how he was able to catch up on his developmental milestones after his surgery. As a mother, it is hard seeing him after the surgery but the end results are well worth it.

Lisa - posted on 09/23/2011

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Hi Andrea! I'm new to this circle and was just wondering if your son has had a surgery yet? My son is now 21 months and needs surgery as well. I'm really nervous and wondered if anyones baby has had this surgery.

Jessica - posted on 03/25/2011

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Andrea,
I am so happy that you are researching doctors. Our Caden is 21 months, and I feel like I have become a semi-expert in the field of pediatric eye disorders. After countless hours researching and making calls, I found Dr. Friedman, and he is wonderful. He is vested in the children he treats, and hugs and playswith Caden like he was part of the family. It is unique to meet someone else who is familiar with congenital, bilateral ptosis. Did you or your father also have fibrosis of the extra-ocular muscles? Have you done any research on CFEOM? I know there are different opinions on when to surgicallly intervene with children, but my because my husband has first hand experience wth living with ptosis even for a short time, it was very important that we acted swiftly, especially because doing so gives you the best odds of preventing vision issues/loss and residual neck and spine issues from tiltig of the head. The little ones are so resilient, and recover so well! Our doctor also encouraged us to start the surgical process early. If I can be of any assistance to you here in the Palm Beaches in finding anything, please let me know, and GOOD LUCK.

God bless,

Jessica

Andrea - posted on 03/25/2011

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Thank You so much Jessica!! I can't wait to call him Monday. I was planning on calling a few down that way this week but, its great to have a good recomendation. I am just so worried about choosing the right doctor that it scares me to death. Thanks again. I will post back after I get an appointment. Feel free for anyone to send any advice my way :-)

Jessica - posted on 03/25/2011

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Hi Andrea,
Both my husband and son have bilateral, congetial ptosis. My husband had his corrections done at Duke MEdical Center, and looks great. I implore you start correcting as soon as you can. My son Caden is having his third surgery on April 15th. He also has muscular fibrosis in both eyes, which is what this surgery is dealing with...again, but his recoveries thus far have been very smooth, and the results are getting better and batter. He will have his lids corrected again this year, but we have see dramatic improvement, and our doctor is amazing. His name is Lee Friedman, and has offices in Wellington, Boynton Beach, and Boca Raton Florida. He is so wonderful to all of us, calls just to see how things are going, and is changing my sons life. Hope this helps.
:) Jessica

Andrea - posted on 02/21/2011

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thank you so much Marisa. Eli will also be 2 in May. I have seen a few doctors one in Tampa and one in Miami, and was planning on waiting but I have noticed him holding his head back alot more to see, also my mom said that I was around 2 when I underwent my first surgery. I just really am amazed at how far this procedure has come and really want to make sure he gets it done before any schooling. I know first hand how cruel kids (and adults) can be and I don't want him to have to go through what I did, so I'm opting to go ahead now. Best of luck to you and your family and thank you again, I'm looking him up asap :-)

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