Questions and Answers

Here are answers to questions that we find ourselves often answering for people .

Q. What made you first think something was wrong with Caleb eyes?
A. When he was born, we noticed that Caleb did not open his eyes often and if he did, they were not opened fully. He looked like he was just peeking at us; we could see his eyeballs darting around.  At first we thought that Caleb was either a very sleepy baby or that his eyes were sensitive to light. He was born at 37 weeks so we guessed that maybe he thought he was still in utero. Having spent many hours with him in dim light while nursing him at night, I noticed that he still didn’t open his eyes fully so I didn’t think it was light sensitivity.

We still saw the same peeking eyes at 5 weeks so we took him to our family doctor.

Q. Why does Caleb have tape on his eyes?
A. Blepharophimosis causes Caleb to have drooping eyelids. As a result he can only lift his eyelids about 1 mm on his own. The tape helps to support his eyelids as he tries to open them, allowing him to lift his eyelids 3 to 4 mm. This is just enough to allow his pupils to be exposed to light.
Updated A. Since having surgery in December 2009, Caleb no longer needs tape on his eyes! The surgery widened his eyes towards nose; this helped him to be able to open his eyes enough that he can see effectively.

Q. Can Caleb see?
A. Yes. With the tape on his eyelids, it appears that Caleb has normal visual development for his age.
Updated A. Caleb’s most recent visual assessment shows that his post-surgery visual development continues to be normal for his age.

Q. What kind of specialists are involved in Caleb’s care related to blepharophimosis?
A. Caleb sees Dr. Christopher Lyons, a pediatric ophthalmologist and surgeon at Children’s Hospital in Vancouver, Canada, on a regular basis. He’s been assessed by Dr. Carey Matsuba, a developmental pediatrician with interest in visual development. Through our local infant development program, Caleb is assessed by a physiotherapist.
Updated A. Caleb was seen by a medical genetics specialist, Dr. Yong, at Children’s Hospital in Vancouver.

Q. What kind of treatment has Caleb received for blepharophimosis?
A. Between diagnosis and age 6 months when he had his first surgery, we used medical tape as a temporary measure to support Caleb’s droopy eye lids. Just after 6 months old, Caleb had Y-V conversion surgery to lengthen the width of his eyes and eliminate the overlap between his upper and lower eye lids. He will eventually have one or more surgeries to lift his lids.
Updated A. Caleb wears glasses to correct his far-sightedness (July 2010).

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14 Comments on “Questions and Answers”

  1. Kerri Holmes Says:

    Hi,
    My name is Kerri and I have been reading your great blog. I have a son with blepharophimosis. Ryan is 6 now and we have had 3 operations so far.

    I just thought I would drop you a line and say that I’ve enjoyed reading your blog and have subscribed to follow it.

    Feel free to check out my blog at ryansspecialeyes.blogspot.com

    Thanks,
    Kerri

    • elaine Says:

      Hi Kerri,
      Thanks for your note. I actually followed your sister’s blog for awhile regarding her marathon last year so I’ve visited your blog before. Ryan’s eyes look amazingly natural after the 3 surgeries. We’re not quite at the surgery stage yet because Caleb is too young.
      Elaine

  2. amy Says:

    I very much enjoy your website…Caleb is beautiful. I have 5 children and our son Curtis (#5) has blepharophimosis. He has had one surgery at 8mon (Dec 2010). He had bilateral ptosis surgery which has to be done again but who knows when. They consider the eye surgery to widen his eyes to be cosmetic at this time. I have laughed and cried while reading your site everything hits so close to home. Thanks again for your inspiration may god bless you and your family.

  3. Stephanie Lang Says:

    Hi there! I came across a photo of your little boy Caleb when I was searching for images of Blepharophimosis. Last year I gave birth to my 3rd child, Kaden, who was born with this condition. He was diagnosed by a geneticist within a few days of his birth and had surgery at just 3 weeks old. He could not open his eyes more than a few millimeters. He just had a second surgery on his right eye last month as it was drooping more than the left. What surprised me about your son was how much he looks like mine. They could be twins! I really enjoyed reading your website as it gave me a little bit of an idea of things to come for Kaden. He is also far-sighted and will be fitted for glasses this November. If you want to know more about us, just let me know. I can also send you a picture of Kaden if you would like. Thank you!!

    Stephanie

  4. Megan Rice Says:

    Hi! I came across your blog upon researching Blepharophimosis for a health research paper for college. I chose that topic because I was born with the condition as well. I had two surgeries (one at age 5 and one at age 6) and haven’t needed anything since. It is nice to know there are other people out there who are going through the same thing. It seems like every time my sister or I go see a different doctor they have no idea what we are talking about, and then they research it and find out what kind of condition it is. Thanks for blogging!

    Megan

    • elaine Says:

      Hi Megan,
      Thanks for saying hello. Blepharophimosis is such a rare condition that we do not currently know anyone else in Vancouver, Canada who is traveling a similar journey. It’s nice to hear from someone who had surgery as a child.

  5. Stacy Says:

    Wow, it’s hard to believe that seven and a half years ago, our daughter was born with blepharophimosis. No one in our area had heard of it, so it was a huge (and scary) learning experience. Our daughter had one surgery at 11 months (silastic sling procedure), but none are planned. I have to say, I worried a ton about how her life would unfold living with this condition, but I am happy to say she is a super smart and sassy seven year old! I did research when we got the diagnosis (at about 1 week old), but really there was not much available. I’m not sure why it took me so long to look again, but here I am. (Much more information available now!) Thank you for writing about your journey!

    • elaine Says:

      Hi Stacy,
      It’s great to hear from other families who have a child older than Caleb to know that things work out well for kinds with blepharophimosis :). Thanks for saying hello.
      Elaine

  6. jenn Says:

    Hi! My name is Jenn and I live in Toledo, Ohio. My daughter is now 5 and was diagnosed with blepharophimosis at less than 1 week of her life. Our pediatrician had never seen or heard of the condition, as well as none of the others in her practice—quite a large office. I have had such an emotional roller-coaster over the last 5 years, but especially during her first 1 year of life. Evelyn has had 3 surgeries, including cantoplasty and slings. I just discovered your blog this afternoon and cried when I read it. I have NEVER encountered ANYONE else who has experienced this, either online or otherwise. I would love to correspond with you about this. Evelyn also wears glasses and they really are a blessing in disguise as hardly anyone made comments after she got the glasses at 1 year old. We also waited on surgery but never had any recommendations of taping! I actually had thought of taping them myself but really didn’t realize that was an option! We go to University of Michigan for her care and have been very pleased. Another thing we have in common is that I’m actually a Physical Therapist—and we have many common interests…. I’m so happy that I discovered you!

    • elaine Says:

      Hi Jenn,
      Thanks for your message. I’m glad you stumbled on my blog. I’m always thrilled to hear how the Internet has helped me meet other people who are going through the same journey. Even living in Vancouver, Canada, which is quite a large city, we are yet to meet someone else who has blepharophimosis. I will send you an email so we can talk more. 🙂
      Elaine

      • jenn Says:

        thank you. I am so happy you took the initiative to start this blog! I had thought about it but just never got the nerve up. I had come across blogs of parents who had experienced other medical issues, but nothing like this. What a great idea to “meet” others. You don’t know how much peace of mind it has given me to realize that there are others out there. We, too, have not been able to genetically trace this condition in our family, and no one had any answers on why…For the longest time, I would watch everywhere we went, wondering if we’d meet someone with this same condition, but never did! Our Evelyn is such a blessing and such a bright, fun-loving girl! I would love to send you some pictures if you drop me an email! When I saw your Caleb’s baby pics, it was like seeing Evelyn…By the way, I got a kick out of the comments people would make to you, as I got very similiar comments! Children would ask me why she was sleepwalking…Also, to you have correspondence with any of the others who have commented?

        thanks so much. You have truly made my week!

        Jenn

  7. Mel McDowall Says:

    Thanks for you blog Elaine. I came across your blog while researching pre and post-op photos. I live in Adelaide, Australia and my 2 1/2 year was diagnosed with de novo BPES at 5 months of age. He regularly sees an opthalmologist (eye sight is uneffected), his paediatrician (developmentally on track) and the plan is to have ptosis correction and removal of the epicanthial folds next year. We’re extremely lucky to have the top cranio facial unit in the Southern hemisphere here and the surgeon has operated on 2 complete BPES families.

    Anyway, thank you for sharing Caleb’s story and photos.

    Mel

  8. Alicia Says:

    My son was born with BPES. I was hoping you would email me as we are in BC Canada as well and have recently went to Vancouver to see Dr Lyons. But he is not the one who will be doing the surgery. Who was Calebs surgeon?

    Thank you!


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