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Sharlene - posted on 02/10/2012 ( 21 moms have responded )

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Im 33 yrs old live in sydney Australia , Im a SAHM , with 4 children ,3 of them have special needs and then I have 3 step children and a wonderful husband that helps me in everyway possible way . So firstly welcome to this community and please tell us about yourself and your family .

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Sabrina - posted on 02/21/2012

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My name is Sabrina. I'm 25. I have 3 kids. Xander is 6. Xerek is 4. Audrina is 5 months. Xerek has progressive cone dystrophy, degenerative high myopia, and nystagmus. My oldest son shows no signs of visual issues, and my daughter doesn't show any yet. Time will tell with her though.



Apparently, Progressive cone dystrophy is a genetic disease. 1 in every 100,000 people are carriers, and both parents have to be a carrier for it to appear. the chances of 2 carriers having a child with the disease is 1: 4. My husband and i never knew that we carried it because it wasn't in our family histories. Oh well, we love our little boy and we wouldn't trade him for the world!!!

Jessica - posted on 10/25/2012

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Hi- I live in Pittsburgh, Pennsylvania and I have a three year old son who is blind. He just entered preschool at our local school for the blind but will transfer to regular school for kindergarden in a couple years.



I work for a local university as a writer/web content manager. I just went back to work this summer after being home with my son for the first couple years.



My son has Persistent Fetal Vasculature Syndrome (aka PHPV) but his is severe and bilateral. He has light perception only, and his left eye is also micro. He also has microcephaly, some hypertone, and a hypoplastic corpus callosum. Even after all that he is walking, dancing, singing and just being awesome! I blog about him at http://thomasmarshalldoesitall.blogspot....

Sabrina - posted on 02/22/2012

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@ Kristen Was the dr. talking about your son's retina?? I know that my son's are extremely pale due to the cone dystrophy, but there are a multitude of conditions that it cause pale retinas too...Please keep us posted as you find out more. I'll be praying for a good report!!

Kristen - posted on 02/22/2012

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@ Sharlene. Rylan is doing very well i took him into the drs last a couple of days ago cuz of his constant crying and his dr called his neurologist who thn called me to state he looked over his MRI and its definate its all neurological they started his on a chloral hydrate which scares me but it calms him down my bby is finally showing some signs of sight only wen thngs are far away wen it gets to close its like he losses it gets very confused and frustrated he is finally seeing his eye specialist tomorrow maybe u cn tell me what ths means wen he seen him in the hospital he sed his vessel connected to his eye or something like that is pale and its supposed to be dark i dont get it and he is a poor excuse for a dr he didnt even talk to but i got his eye specialist that were involved with in one of his programs going with me to get answers but yeah he is doing really well for his situation

Sabrina - posted on 02/22/2012

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@ Sharlene. First of all, don't worry about offending me. We're here to learn and support each other. It's great that there's someone to talk to. There's no other parents around me that have visually impaired children, and other parents just don't seem to get it.



Apparently, cone dystrophy is extremely rare, and it is genetic. So few people are carriers of the gene, and to come up with the type he has, both parents have to be carriers for the condition to appear, and then there's still a 1 in 4 chance of it happening. Xerek's dr. said that only about 200 people in the world have the same thing. We are kind of in the same boat as you are. We don't know when Xerek will lose his sight, or how much he will lose altogether. The condition is so rare that there has not been much research with it, and there's currently no way to cure or treat it. I had such a hard time accepting that this will happen to him. I cried for weeks, and in some ways, I blamed myself. But, we have to realized that we are blessed with the time that they do have with their sight and make the most of what we have. I try to protect him the best I can. He is VERY light sensitive, and it's difficult to deal with sometimes. But I do the best I can to protect his eyes and his head (his retinas are at extreme risk of detachment), and let him be a boy as much as he can be.

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Angela - posted on 04/03/2013

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Hi. My name is Angela. I live in Roseville CA. I have 7 children. My youngest son James has Septo Optic Dysplasia SOD. He has light and dark perception and can track. His eyes are also sensitive to sunlight. He also has CP and seizures. An almost full placenta abruption caused his CP. He had 5 minutes of chest compressions and was put on a vent. He came home from the NICU when he was 22 days old.

Kristy - posted on 03/07/2013

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Hello, My name is Kristy I live in Denver CO, I am a young mother of 4 my oldest son Trenton has Hydrocephalus, CP and many other on going medical conditions.when I was 6 weeks pregnant everything was fine with my precious little boy. When I was 8 months pregnant, I was told that Trenton had a stroke, the stroke caused 85 percent brain damage, and this has made his right side of his body nonfunctional. He is on able to sit, crawl, walk, and has visional impairment. The blood clot that originally traveled through his heart into his brain, caused an intraventricular hemorrhage on the left side of the brain, this cause a blockage in the spinal cord and the spinal fluid was on able to drain properly, causing hydrocephalus. When he was 5 weeks old, weighing only 5 pounds, he had his first brain surgery. This was to have a shunt placed to save his life and control his hydrocephalus. There is a tube placed in to the brain and that tube runs just beneath the skin all the way to the abdomen, to drain the excessive fluid. Now at age 2 he has been diagnosed by the neurologist with cerebral palsy. He has had corrective eye surgery for strabismus at 18 months old. He has recently had a G-button/pyloraplasty surgery in late January, things have not gone well, and he has granulation tissue and infection around his site. He started vomiting in October and even now 6 weeks post op he is still vomiting. So in all we have had a long journey in a short period of time. His vision was damage to the optic nerve and after a couple shut failures before age one, there was more damage to his optic nerves on both sides. We are not able to understand his vision because his communication is so Limited. But I would like to hear any ideas or thoughts of other moms.

Sherri - posted on 11/28/2012

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My 4 month old grandson Jeremiah was recently professionally diagnosed from an eye specialist here near Sacramento California with bilateral ptosis. I mentioned my concern over his eyes at his 2 month well child check ( September 2012) and was told we would "watch it" but if it got to the point where we thought it was covering his pupils to let her know. I worried and wondered about it a lot every day since then as he just was not as wide eyed as my three kids were and like most kids I have ever seen, I did a lot of research on the internet when googling "lazy eye" etc and found pictures of what my poor baby Jeremiah looked like I feel as if I diagnosed him myself. I emailed his MD right away and attached more recent pictures of him and she within 10 mins was on the phone to my daughter and emailed us back to say she agreed that he had gotten worse since she had seen him last and referred us to the eye specialist right away. We were able to get him an appt within one week, We say the MD he said that he is tracking very well and thee is no astigmatism. We are very thankful for that. The MD said ideally he would have surgery between 3-4 yeas of age but did not feel Jeremiah would make it that old. We are now going to have very close monitoring to make sure that it does not get any worse and have an appt on 1-11-2013. I am so worried about him, worried about his development as he has to lift his chin so high in order to see, sad for him that people look at him and say comments like " open your eyes boy, we need to tape his eyes open, why is he always so tired, what is wrong wtih his eyes etc". The one thing that the MD said to me that really bothered me a LOT was when I asked him what the success rate of the surgery and he said "what do you consider a sucessful surgery" I said well that he can see easier he said well yes he will, will he ever be perfect looking, well no".,,I was not asking him to make him look perfect I want him to be able to see and see easier, I am sorry for rambling I am just really upset. I would love to hear from other mothers/parents/families/patients that have had the corrective surgery done and your experience, concerns, comments etc. you can email me at sherri.gager@yahoo.com Thank you so much..

Hanna - posted on 11/07/2012

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Hi~ I live in Vadnais Heights, Minnesota and am 29 years old. I am an RN, but have decided to become a stay at home mom for a while. I have one little girl named Addison, who is 9 months old.



Addie was diagnosed with septo optic dysplasia at 4 months. She is missing the septum pellucidum and has small optic nerves. The retina in her left eye was folded, and 2 months ago she had a procedure to correct the retina so it wouldn't detatch. We don't know how well she can see and her opthamologist hasn't given us hope that she will see. We have been very lucky that her pituitary gland was not affected. And she doesn't seem to have delays. She rolls all over the place, loves to jump and she knows exactly where her nuk is.



The most frustrating thing is, is that this disorder has such a broad spectrum and we have to wait and see till she is older to know if she will be developmentally delayed and how poor her eyesight will be.

Sharlene - posted on 06/29/2012

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Hi Marie, welcome to the group, God have your hands full. lol . take care

Marie - posted on 06/29/2012

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im 32 years old mother of 4 children my oldest is 14 then i have a 12 year old a 9 and a 7. my olderst has panic attacks, the second child she is bipolor, post tramidic syndrm, my thrid child accidently swallowed paint thinner when he was 1 now he see the way it looks at a fun hose, my youngest has a hard time with short term memory and just dont seem to hear you at times she has no fear so thats a little scary. i myself am bipolor. nice to meet u all. my name is marie

App+7mnejhu - posted on 04/01/2012

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Hi. My name is Lisa, my husband and I have 3 crazy girls. My husband is army so we move a lot, currently in ky, but moving to va in a month. Our middle child who is now 18 months was born with persistent fetal vascular syndrome, both her retinas were completely detached at birth. The specialists said there was no point in reattaching them because virtually none was developed. She developed cataracts and glaucoma having lenscopies several times to try and help with the pressure but it kept coming back up. So finally this past December (for the left) and February (for the right) she had enucleations of both eye. Our youngest daughter (4months)was born with extreme nearsightedness which we are hoping will correct itself. Our eldest (4yrs) doesn't seem to have any issues so far.



As for family history by dad and eldest uncle have achromatopsia and my youngest cousin has aniridia.

Emily - posted on 03/30/2012

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Hello everyone, my name is Emily and I live in Wisconsin. I'm 35 and I have 2 children, Morgan 7 and Blake almost 1 (next week).I am currently unemployed (got laid off after 12 years in a "company restructure") so I am going to be going back to school starting this summer for Opthamoligic Technician :)



So eye issues, will lets start with my husband. He was born with one eye underdeveloped, and has always been legaly blind in that eye. He also has severe high myopia and only ever had a corrected vision of 20/60 in his good eye. He also has mild nystagmus. 4 years ago he suffered back to back retinal detachments in his good eye damaging the retina and leaving him legaly blind in that eye as well. He then developed double cataracts, had them corrected and then had a secondary cataract in his "good eye" corrected 2 years ago. He is unable to work anymore because he can't drive and needs txt enlarged to a mininum of 36 font and gets eye strain extremely easily. Our computer screen is a 32" tv so he (and our kids) can even use it.



Our daughter was a 34 week preemie, she developed mild ROP but also inherated her fathers severe high myopia. She also has severe nystagmus, amblyopia, minimal depth perception, pale retinas (can't remember the name of that one lol) and blind spots due to retinal attachment issues. She got her first pair of glasses when she was 9 months old -15.5 both eyes...She had lazer surger on her retinas when she was 4.5 years old to seal any tears and weak spots and they also lazered completely around the retinas to help prevent any future detachments. They added a +3 byfocal to her glasses when she was 5 to help with reading but because of her blind spots and nystagmys she still prefers to look over her glasses and just hold things really close. She got contacts last summer just before she turned 7 and they have made a world of difference. She went from a correction of 20/120 with her glasses to 20/70 with her contacts!!! She uses reading glasses for near work, has things enlarged to a minimun of 18 font per her vision specialist that sees her once a week at school. She also has OT 2x a week to help with small motor skills.



Our son was a 31 week preemie (tried to be 28!!) and also inherated daddy's myopia. He got his first pair of glasses @ 7 months -14.5 both eyes. Luckely he doesn't have any nystagmus or amblopia but he does have the pale retinas and we're not sure on the depth perception yet. He had his lazer surgery when he was 8 months old, same thing they did with our daughter. Being that he is only 11 months old we don't know how good his correction is or if he has any blind spots. Time will tell...



It's good to have other mommies that can relate to everything we, and our kids, go through on a daily basis.

Kerry - posted on 03/05/2012

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Hi. My name is Kerry and I have 3 kids and 1 on the way. My oldest (8) son has terrible vision and has worn glasses since he was 3. He has trouble with tracking and the doc is talking about bifocals for him. He also is ADHD and has mood issues as well. My second guy has PDD-NOS which puts him on the autism spectrum. Among speech and sensory issues he also has an eye condition. He was born with ptosis, which is droopy eyelids. He has had 7 surgeries to correct it and needs at least another one. He is only 6 and has worn glasses since he was 18 months. THe corrected eye is not doing well so we have to patch him for 2 hours a day to try to stregthen it. You can imagine how well that goes over with a child with sensory issues! He is a fighter and has been through a lot but we don't know what will happen with his eyes next.



My daughter's eyes are fine at this point. We are expecting another girl in July so we will see what her story will be. One of the things that has helped with my 8 year old as he has started to read is to get him a Kindle. He is able to blow up the print so he can read it.



I am a stay at home Mom and I live in Chicago. It is hard (as I know everyone can relate to) always going to some doctor or therapy appointment.

Glenda - posted on 03/04/2012

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Hi, my name is Glenda and my 3 year old baby girl is visually impaired due to ROP. I had preeclampsia when I was 26 weeks pregnant with her so the doctors did an emergency csection. My husband is in the air force so we were stationed in Korea at the time. Well, the Korean doctors misdiagnosed her and told us she has ROP stage 1 but it was really stage 3. She had 4 laser eye surgeries but didn't work, her retina lifted on the right and completely detached on th left so her left eye was severely damaged. The doctor from UCSD was able to repair it but her central vision has scarring so it caused her strabismus and she had surgery for that too. She is now wearing eye glasses and receiving services from blind babies association.

Malinda - posted on 03/03/2012

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Hi my name is Malinda I am from Adelaide, Australia I have two beautiful children a 4 wk old son and a 7 yr old daughter with septo-optic dysplasia who is completely blind I am looking forward to chatting with other mums with similar experiences :)

Kristen - posted on 02/23/2012

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We just got back from the eye specialist he sed his eyes look GREAT he still has the paleness so he wants to see him bak in 4 months but it was very pos.

Sharlene - posted on 02/21/2012

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@ Kristen . Im so sorry to hear that ,How is he doing now . And how are you managing with all this and do you have other family members to support you

Sharlene - posted on 02/21/2012

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@ Sabrina . Im so sorry to hear that ,You sound like your a brave mom with this disease with your little angels . Im still trying to cope with the possiablity james going blind with have contacted the blind association and there providing visual aides for him at school and home . But it's hard to say and even the specilalist cant give us when he wpould being loosing complete vision . Can surgery help or other visual aides or services . Can I ask you is it a genetic gene that got missed with the deveolpment of the baby . My son was born with autism and was born with the squit and had surgery at 4 yrs old and now there saying him loosing his vision is the course of his autism and it was the course of the deveolpment of baby . Sorry I hopde I didnt offered ypou in anyway .It sjust good to speak to someone about this .take care. : )

Kristen - posted on 02/19/2012

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Mi name is kristen im 21 years old im a single mom i live in ohio i hav a 3 year old boy and az 3 month old boy mi 3month old at two weeks was diagnosed with multiple strokes and HSV2 encephalitis to what his outcome will b long term only time will tell he has yet to show signs of sight one of the most commen long term issue in children with ths

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