Peter's anomaly/Peter's Plus Syndrome
Does anyone have a child with either of these disorders?
My 11 (almost 12) year old step-daughter was born with Peter's Plus Syndrome. There's very little known about the disorder, but a bit more research is coming out. Peter's Anomaly is more common, but they both effect the eyes the same.
We've been very lucky so far, as she has a minor case. She had bi-lateral corneal transplants at 2 and 4 weeks or age to save her vision. She gets her eyes checked every year and has to have a pressure check at each visit due to her very high risk of glaucoma. She wears glasses and with her glasses it's estimated that her vision is about 20/40.
She also had minor surgery to correct a lazy eye (which we believe was genetic rather than part of the disorder) a little over a year ago.
Ive never heard of that disorder, tinkerbell. I am glad to hear she is a minor case. Is her condition improvable?
There is a chance that Elijah may have to have the surgery to correct his lazy eye so I am pretty nervous to possibly hear those words.
Her eye sight will never improve past what it is without glasses. Hopefully as she gets older they'll be able to get a better prescription for her glasses. We're very lucky, many children with peters plus and peters anomaly can lose their eye sight completely. Many are taught braille at a young age to prepare them for the loss of their sight.
Peter's Anomaly is the condition that effects just the eyes. Peter's Plus effects the eyes in the same way, but also presents with short limb dwarfism, developmental delays, skeletal defects, kidney defects, hydrocephalus, and heart defects.
She has the developmental delays and slight short limb dwarfism (mostly effecting her arms). She is about 2 years behind her age group developmentally, and sees a geneticist and cardiologist each year as preventative care to be sure that nothing has changed. She's going to be re-evaluated this summer for speech, occupational, and physical therapy.
Awe well bless her heart. Im sure she is quite the fighter :) I am looking forward to hearing about your daughters journey in the future!
Quoting Tinkerbellmama:Her eye sight will never improve past what it is without glasses. Hopefully as she gets older they'll be able to get a better prescription for her glasses. We're very lucky, many children with peters plus and peters anomaly can lose their eye sight completely. Many are taught braille at a young age to prepare them for the loss of their sight.
Peter's Anomaly is the condition that effects just the eyes. Peter's Plus effects the eyes in the same way, but also presents with short limb dwarfism, developmental delays, skeletal defects, kidney defects, hydrocephalus, and heart defects.
She has the developmental delays and slight short limb dwarfism (mostly effecting her arms). She is about 2 years behind her age group developmentally, and sees a geneticist and cardiologist each year as preventative care to be sure that nothing has changed. She's going to be re-evaluated this summer for speech, occupational, and physical therapy.
Thank you :)
She's an awesome kid, such an inspiration!
Quoting BEXi:Awe well bless her heart. Im sure she is quite the fighter :) I am looking forward to hearing about your daughters journey in the future!
Quoting Tinkerbellmama:Her eye sight will never improve past what it is without glasses. Hopefully as she gets older they'll be able to get a better prescription for her glasses. We're very lucky, many children with peters plus and peters anomaly can lose their eye sight completely. Many are taught braille at a young age to prepare them for the loss of their sight.
Peter's Anomaly is the condition that effects just the eyes. Peter's Plus effects the eyes in the same way, but also presents with short limb dwarfism, developmental delays, skeletal defects, kidney defects, hydrocephalus, and heart defects.
She has the developmental delays and slight short limb dwarfism (mostly effecting her arms). She is about 2 years behind her age group developmentally, and sees a geneticist and cardiologist each year as preventative care to be sure that nothing has changed. She's going to be re-evaluated this summer for speech, occupational, and physical therapy.
My almost-5-year-old stepson has Peter's Plus Syndrome. He will have a second cornea transplant in the near future. He has the short limbed dwarfism, but he just looks like he is a toddler, developmental delays, and doesn't speak.
Despite all these things, he is the most lovable little giy!! He finds a way to let us know what he wants, even though he can't communicate.
Going from glasses to contacts?
- Tinkerbellmama
on Apr. 19, 2012 at 1:37 PM