My son Sam was born with Peter's Anomaly. It is a very rare eye condition. Currently the medical info suggests there are only 50-100 cases worldwide. It's so rare that the NORD National Organization of Rare Diseases lists it but has no info on it...
The most common symptom is a cloudy corneas which makes it impossible for the child to see out of the eyes. The cornea is basically the wind shield of the eye. If you can imagine a dirty windshield, that is basically what a child sees. There are other problems related to the eye- size, pressure etc.
Our son had corneal transplants which he rejected and now has corneal implants which has given him alot more sight. It is hard currently he has to have 32 eye drops a day!
Peter's Plus is the eye condition plus learning delays, short statue and a host of medical problems. We feel Sam has that also. There is not a chromosomal marker yet so it is not confirmed but he has about 75% of the symptoms.
It's very hard to find info about this condition. I plan on setting up a website to try and help other parents. It was a shock when we found out and no one was there for us so I'd like to be there for some other families.
hello I am sorry for your sons disability. I have a son who is on the autism spectrum and have lost a daughter. Please dont doubt your faith because of the free will of men. God gave us free will because he is good. The nature of free will means that all of us can do what we like. Now where we live the earth is sick. It is possible that the ordinary pollutions that you and all of us must live with could have poisoned your son during the critical first trimester of his development. It was not God. I believe he cries and the earth cries with you. Look into it. If you intend to create more children research how we as women and child creators are affected. Lots of love abdarm
ReplyDeletehi my name is Rosa and i would like to start off by saying thank u for giving me some more input on peter`s anomaly. I am 21 y.old and a mother of 3, my oldest son was born with peters anomaly. He was diagnosised with it after only 5 day of being born. i didnt know what to do. i broke down. i started doing some research on it and til this day i havent found anything helpful til i stumbled across your store. I think that it`s great that you`re goung to make a websit for parents like us, who need more info about this condition, and can actually relate to each other.
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Why nt try transfer factor ..? Basically dis miracle molecule cn help frm d roots wic is our immune system ...by doubling its activities it may help counter d problem frm the roots ..wic means it'll slows down d movement of d disease ..
ReplyDeleteHello.My son who is now 17 years old was born with peters anomaly in his left eye. He has no vision at all in it. I felt that no one knew much about this condition or offered any help,he has gone for regular eye checks once a year,but that is only to check if his good eye is working normally. A cornea transplant was mentioned but given the fact he had one good eye it was not advised,as the doctor felt it might reject and lead to a painful eye. I am glad you have put this information on here as it helps to learn of others going through this too.
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DeleteMy name is Jennifer and I also have peters. I'm 21 years old and I have never met or talked to anyone near my age that also has it. Peters is present in my left eye, I am just about completely blind in that eye despite being able to see changes in light and color. My right eye has always been fine up until about 2 years ago, I have noticed a drastic change in vision. I'd really appreciate to hear what it's like for another peer to have Peters, im wondering if you have noticed any visual changes in your sons eye that have progressed with age. I really look forward to hearing your response. Thank you, Jennifer
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Pleased assist with any information about the other problems i kids suffer from. My daughter was diagnosed at birth as well in her left eye. She is 12 but seems not to be developing normally. Are there any other symptoms i should be worried about please i am at my wits end please help.My email is leeandra01@gmail.com any information that can help please let me know. Thank you for your help.
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Our children are also delayed
Please help.My daughter was diagnosed at birth as well she is now 12 and i am noticing other problems in particular she does not seen to be maturing like other kids and seems to struggle with school when she never used to. Has any one experienced this or anything that i should look out for? Please contact me if you have any information that can help me i am at my wits end. My email is leeandra01@gmail.com thank you
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Please mike your situation seems to be like mine please if. Possible get in touch with me as i think you night have the information i need since case seems similar
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Our son also has been diagnosed with Peter's Plus syndrome. Interestingly enough, my husband is also a pastor of a small church and a National Guard chaplain. Our son had been scheduled for the cornea transplant, but was too sick with pneumonia all winter and ended up having the trach. Now, when they re-tested his eye, they found that the cloudiness is greatly cleared up and he doesn't need the transplant! We are happy about that.
ReplyDeleteMy brother is 41... cornea transplant on his left eye did not take... then they wanted to do the same with his right eye, my mom said no.... over the years it has cleared up a lot on it's own.
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So sorry I'm just now seeing these contacts! Please contact me at theclanton5@ail.com.
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ReplyDeleteIm in the UK.My son has bilateral peters anomoly but only bad in one eye.The left.He also had a dysplastic kidney which has been removed and and severe hearing loss on one side.He is nearly two now and is on the short side.He has more rarer symptoms of peters plus and we still waiting on the genetic results.Im just glad to find somewhere to chat about this.We decided against cornea transplant as we just want him left alone to be a kid and grow up happy.Developing his personality is impoetant to us.I hope we can all stay in touch.As our kids future is an unexpected rare situation that only we can relate to.
please reconsider the transplants or look at implants. Our son was able to have them and it made a huge difference. Our daughter Sarah was unable to and her development is so much behind Sam.
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ReplyDeleteIm in the UK.My son has bilateral peters anomoly but only bad in one eye.The left.He also had a dysplastic kidney which has been removed and and severe hearing loss on one side.He is nearly two now and is on the short side.He has more rarer symptoms of peters plus and we still waiting on the genetic results.Im just glad to find somewhere to chat about this.We decided against cornea transplant as we just want him left alone to be a kid and grow up happy.Developing his personality is impoetant to us.I hope we can all stay in touch.As our kids future is an unexpected rare situation that only we can relate to.
Im in indonesia.my daughter 1month has peters anomaly.diagnosed when she just 2days old.at my country doctors recomend corneal transplant at age 1 or more.here we dont have support group since its so rare.thank you for the blog so i dont felt alone
ReplyDeleteHi, I am Diane Cox, I have a brother that was diagnosed in 1975 3 days after his birt. Peters Anomaly Plus with Short Limb Dwarfism.
ReplyDeleteWe live in Louisiana. He has always been cared for by family.
He can see some out of his right eye. They did a corneal transplant on his left eye as an infant..... did not take. He only has use of his right hand.... other limbs are of VERY little use. He is also like Rain man an Autistic Savant. Still in diapers. Communicates very well though he has a very strong speech impediment.
My question is seeing this is SO VERY RARE how many people are living with this at this time?
Hi, I'm Diane... I have a brother that was diagnosed in 1975, 3 days after birth with Peters Anomaly Plus with Short Limb Dwarfism.
ReplyDeleteHe had a corneal transplant on his left eye as an infant.. did not take.
He can see some out of his right eye... my mom would not let them do the other eye.
He is an autistic savant & only has use of his right hand.
Communicates well.... although he has a bad speech impediment.
His DVD collection is huge... but he can not only tell you who gave it to him but when. He knows what time it is at all times and don't need a clock.
He will tell you at 8:00 pm to put in Knight Rider season 4 disc 3 side B.... he wants to watch it at 1:00 pm tomorrow. ... but he has to have it in NOW!
He is 41, About 170 lbs, still in diapers and has ALWAYS been cared for by family.
We live in Louisiana, and for some reason God trusted my family to care for Dan, what an honor and a trip.
They told my mom for years, just put him in a home and get on with your life. You have 3 healthy children.
Her answer never changed..... he has a HOME & a FAMILY! How could I get on with my life, not knowing what my son is going through.
He still has a home and family.
Let me add.... Dan was a twin... his twin was stillborn with a cleft lip.... my family did turn him over to science in hope they could find some answers since so little is known.
Hi, I'm Diane... I have a brother that was diagnosed in 1975, 3 days after birth with Peters Anomaly Plus with Short Limb Dwarfism. Less than 75 cases ever reported worldwide.
ReplyDeleteHe had a corneal transplant on his left eye as an infant.. did not take.
He can see some out of his right eye... my mom would not let them do the other eye.
He is an autistic savant & only has use of his right hand.he got a good dose of autism.
Communicates well.... although he has a bad speech impediment.
His DVD collection is huge... but he can not only tell you who gave it to him but when. He knows what time it is at all times and don't need a clock.
He will tell you at 8:00 pm to put in Knight Rider season 4 disc 3 side B.... he wants to watch it at 1:00 pm tomorrow. ... but he has to have it in NOW!
He is 41, About 170 lbs, still in diapers and has ALWAYS been cared for by family.
We live in Louisiana, and for some reason God trusted my family to care for Dan, what an honor and a trip.
They told my mom for years, just put him in a home and get on with your life. You have 3 healthy children.
Her answer never changed..... he has a HOME & a FAMILY! How could I get on with my life, not knowing what my son is going through.
He still has a home and family.
Let me add.... Dan was a twin... his twin was stillborn with a cleft lip.... my family did turn him over to science in hope they could find some answers since so little is known.
Hello.My son who is now 27 years old was born with peters anomaly in his both eyes. One eye worse then the other. He has very little vision in his right eye in which he had a cornea transplant at the age of 7 months. He was born with this condition, and back then Cincinnati Children's Hospital did not know much about the eye condition. I moved to Nashville TN and a doctor at Vanderbuilt knew exactly what it was, we moved back to Ohio and there had been a little girl born with it by then, seemed like every surgery my son had she was there also. They have since treated it mainly like glaucoma. He has excellent eye doctors and was once told he would not be able to see to drive. Well he has defeated all odds and was able to drive, go to college and just started work as a social worker. But, he just told me he feels his sight getting worse. Has anyone seen this happen? He is so scared that he is loosing his sight. Please if anyone has any information please share, I do not know how or what to say to him. Is he going to loose his sight?
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Hi is the PA group still there
ReplyDeleteKindly like to join you on Facebook
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