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For parents of children with visual impairments

ROP issues

Posted by dpkdkd on 7/1/2008 10:28:57 PM.

There are currently 26 replies.

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  1 . Re: ROP issues
  Posted by oneillfamily on 07/09/2008
  
  Hi, there. I agree so much in that it is nice to hear stories from other parents who have been down the NICU road and have visual impairment as well. It is certainly a unique combination. My daughter is a bit younger--will be four this weekend. She, too, has had laser(s), vitrectomies, lensectomies, cataracts, and glaucoma in one eye, which eventually was enucleated as it lost all pressure after surgery done to relieve the pressure. Her left retina was a grade 4B and is totally reattached and apparently healthy. She has some useable, close-up vision in that eye--enough to see letters, numbers, colors...but has difficulty with visual-motor skills and things that move quickly. Medically speaking, she has done pretty well; she had a grade III brain bleed in the NICU which has left her with a bit of mild CP which manifests itself in gross motor delays. She is walking now, talking and as you said, advanced in some areas such as cognition; her challenges are more motorically and keeping up socially.
  
  I have had the opportunity over the last few years to connect with quite a few parents who are in the post NICU, ROP journey. It really seems like there is quite a mix-up of the challenges our children face. It is overwhelming sometimes for me to think of all of the things that our kids have had to overcome to be where they are.
  
  Best,
  
  Jen
  
  
  
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  2 . Re: ROP issues
  Posted by Judith Lesner on 07/11/2008
  
  Hi Jen,
  And it is important to remember during the tough times that they do keep on overcoming.
  Judith
  
  
  
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  3 . Re: ROP issues
  Posted by CAGarrison67 on 07/29/2008
  
  My son was born 8 months ago and has ROP. He was born 4 months early. We know that he has some visual impairment but the doctors cannot yet tell us what he can or cannot see... all I know is he doesn't focus on me or things like other babies. He also had bilateral grade 3 brain bleeds and has a VP shunt. I was just wondering when you all actually found out a semi-solid answer to the "what can my child see" question...
  
  
  
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  4 . Re: ROP issues
  Posted by ycats on 07/31/2008
  
  Our son was born at 23 weeks. He had bi-lateral grade 2-3 bleeds on his brain. He has had 14 surgeries in all, 7 of them being on his eyes. His left eye has some partial detachment of the retina. During one of his surgeries they did have to remove his lenses. As a result he wears contacts on both eyes ( when we can keep them in). Every six months we go to Michigan for exams. We think that he can see some light and maybe shadows. He has a real aversion to drinking and eating foods with textures, so he has a g-tube and we blend up all of his food. It is so great to hear other stories, not many people can understand what we go through on a day to day basis.
  
  
  
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  5 . Re: ROP issues
  Posted by sweetbabyboy on 08/21/2008
  
  Hi, it is so nice to hear that I am not alone. I too had a baby born prematurely (23 weeks). He spent 5 months in the NICU. He is currently 16 months old. He has had numerous eye surgeries, and right now we are just hoping for him to see the best that he can see. We do eye exercises daily hoping to strengthen his eyes, and to teach him to see. The doctors tell us that we won't know the extent of his vision until he is 3 years old. So in the meantime we try to be hopeful and just enjoy our little baby boy.
  
  
  
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  6 . Re: ROP issues
  Posted by ilovetoteach on 09/30/2008
  
  I am a teacher for children with visual impairments working exclusively with infants and toddlers. I get so annoyed when doctors tell parents it's too early to tell what their children are seeing! I do functional vision assessments on babies as young as three months old. Please contact the agency responsible for the federal Infant Toddler Program in your area, and see if you can get early intervention services for your child that are specific to vision. Our services are free to children and families who are eligible--a diagnosis of any of the conditions on this site would get you in. Good luck, everyone!
  
  
  
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  7 . Re: ROP issues
  Posted by Judith Lesner on 11/12/2008
  
  Have been away and am still in the process of "catching up". Very interesting posts on this site. Definitely agree with the value of a functional vision assessment but am not sure that all pediatricians are aware of them. Think most of them think that the only assesment that counts is the standard "read the chart" one. Also, parents can be very valuable observers as to how their child uses his/her eyes/vision. I kept telling our pediatric ophthalmologist that my toddler son was only using one eye. He insisted that that was not true as he could get him to use both eyes during an examination. Then one visit he couldn't get him to use the other eye and he said - your baby is only using one eye. I resisted the temptation to tell him "I told you so." Keep observing and you will discover stuff on your own.
  Judith
  
  
  
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  8 . Re: ROP issues
  Posted by ToniaS on 11/13/2008
  
  Hi I am new to this group. I cant believe how many have babies that were born so early. I have twin girls that were born at 24 weeks gestation. One is visually impaired she has had both retinas partially detach and has a wrinkle in the middle of both of her eyes in center of her vision so she looks kind of to the side. Has had 2 laser surgeries but was not able to have vitrectomy because our retina specialist didnt think there was anything else to be done. When we went to Beaumonth Hospital in MI Dr Capone told us in not so many words if we would of brought her to him a few months sooner he could of improved her vision. What a blow that was. But she has functional vision in both eyes but is legally blind. She sees letters colors numbers and can see most of everything but at very close to her nose. She doesnt see things that have the same background color as an object so we have to be careful. She learned to ride a two wheeler this summer and is awesome at it. Something I never thought I would see some 5 years ago when she and her sister were born weighing 1 1/2 pounds each. You must listen to your instincts you know whats best for your child and you know them the best. You must be insistent in certain situations with the doctors. The single most frustrating thing for me when Ariana was an infant is I didnt know what she saw. I asked over and over at each doctor visit to tell me what she sees so I can help her. they continued to tell me we dont know and wont know until she can tell us. Well, a visually impaired child that has been that way her whole life doesnt know any different so to her its normal what she sees. So, I dont think we will ever know what they see and how. I feel very fortunate that Ariana has so much funtional vision and we pray every day she keeps it. But we are prepared to deal with it if she does become blind at some point in her life. Her ROP has been stable for the past 4 years and hopefully will continue the rest of her life. God Bless
  
  
  
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  9 . Re: ROP issues
  Posted by chunga21 on 11/17/2008
  
  Gabby was born severely premature 25 weeks weighing 19 ounces. She developed ROP immediately after being discharged from the NICU 3 months! She had sclera buckles put on both eyes and then removed 6 months later. She has had strasbismus, still has nystagmus and is now 10 years old.
  She has no vision in her right eye and sees about 20/200 in her left. She has a can for safe travel and wears glasses.
  
  She attends the 4th grade in a regular public school. She has her challenges, reading and writing and concentrating sometimes. Other than that she is perfect! She loves playing her xbox and watching TV. I suppose I am blessed that she has some vision although we have our struggles. I have been and continue to be a very involved parent. I make sure that her IEPs are current and work with the NJ commission for the blind to make sure she is getting everything she needs.
  This is your new life's work. Caring for your child and making sure they live up to their fullest potential is your responsibility.
  
  No one is going to tell you, you need to keep yourself informed and involved.
  
  Good Luck!
  
  
  
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  10 . Re: ROP issues
  Posted by Judith Lesner on 11/20/2008
  
  Thanks for sharing your story Tonia. It sounds as though Ariana is really doing well. She sounds like a great kid.
  Judith
  
  
  
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  11 . Re: ROP issues
  Posted by ruddtwo on 01/04/2009
  
  Ethan, one of triplets, was born at 25 weeks and weighed 1 lb 11 oz. He had both retinas completely detached--lots of surgeries to try and help, but nothing worked. He was just diagnosed this year as very high functioning autistic. Although he's a very social guy, he's got some "quirks" or "tics" (like obsessively talking about the doctor/dentist). He attends Overbrook School for the Blind and is in 2nd grade. He is learning, slowly, how to use a cane around school. He is definitely behind his triplets siblings academically and emotionally, but is extremely bright. We attended the Hershey Feeding clinic this past summer to get him off his feeding tube. He now drinks enough PediaSure that he doesn't need tube feedings. Actual chewing is still a "developing skill"! While I wouldn't wish this on anyone, it's nice to see there are others out there walking the same path.
  Tina
  
  
  
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  12 . Re: ROP issues
  Posted by Judith Lesner on 01/06/2009
  
  Hi Tina,
  Thanks for sharing your child's progress with us. Getting him off the feeding tube is a really great step. Good luck with the chewing.
  Judith
  
  
  
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  13 . Re: ROP issues
  Posted by blondiefrommd on 08/17/2009
  
  i too wonder when i will know about my daughters vision - her teacher from the School for the Blind - brought out a light board - which she does seem to see a little - they have done a functional vision test as well ( she says no light perception ) my daughter has had 7 eye surgeries and Dr Trese was the last to see her - said don't do anymore - im just putting $$ in the Doctors pockets.
  
  
  
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  14 . Re: ROP issues
  Posted by Judith Lesner on 08/28/2009
  
  Hi,
  How old is your daughter? Usually as our children age it becomes easier to assess their vision.
  Judith
  
  
  
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  15 . Re: ROP issues
  Posted by Judith Lesner on 08/28/2009
  
  Hi,
  How old is your daughter? Usually as our children age it becomes easier to assess their vision.
  Judith
  
  
  
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  16 . Re: ROP issues
  Posted by blondiefrommd on 09/02/2009
  
  My daughter will be 17 months on 9-9-09 - she is one of triplets my youngest did not survive - losing her at 13 days old, my other daughter had ROP too but she sees fine - Noels vision is worse - stage 5 with plus
  
  
  
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  17 . Re: ROP issues
  Posted by nsolsaa on 03/09/2010
  
  My daughter is 9 and in public school in 4th grade. She was born at 24 1/2 weeks, weighing just over one pound. When she was two weeks old, she developed staph infection and blood clot in her left leg. They had to amputate the leg above the knee. After multiple eye surgeries, she has stage 5 ROP in both eyes; no light perception in both eyes.
  
  With all that is "wrong" with my daughter, we feel very blessed. She is reading and writing braille. She has a prosthetic leg (from Shriners hospital--Thank you, Shriners). She is a good eater. She uses her white cane; although she is still learning to use the right techniques, etc. She loves school and loves meeting new people. She can talk your ear off; although, her speech was delayed until she was over 3yo. She has normal hearing.
  
  My daughter does have a seizure disorder. She has had 3 episodes and is taking medicine.
  
  I have enjoyed this post. There like hearing from parents who have similar experiences. Thank you.
  
  (This post was edited by the author on 03/09/2010 )
  
  
  
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  18 . Re: ROP issues
  Posted by earthgypsy186 on 06/14/2010
  
  my daughter is 4mo old and will be coming home in a week or two. I had her at 24wks. she has had the laser and she just had the other eye surgery where they have to take off her lenses because she had both retina's detached. i noticed a lot of people mentioned that there children had more difficulty socializing and learning, is that normal for children who have vision problems? when does a doctor give an answer about what they see or not? it is so good to hear about other people who have gone through these things but also very sad to know what she might have to go through in the future. It can be quite overwhelming.
  
  (This post was edited by the author on 06/14/2010 )
  
  
  
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  19 . Re: ROP issues
  Posted by Judith Lesner on 06/19/2010
  
  Not knowing is always the hardest part. i speak from experience. However, you just have to keep on keeping on and concentrate on each day's events. As our kids get older, it becomes easier to know what is going on with their vision. Yes, our children often have more difficulty with socialization because of their limited eyesight. They don't get the non-verbal cues and information (facial expressions, body language, etc) that make up much of our interaction as human. Having said that, I need to say that I know many adults who are visually impaired that have great social skills and lots of friends.
  judith
  
  
  
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  20 . Re: ROP issues
  Posted by DMCCURDY on 12/08/2010
  
  Hello,
  I had former 24 week twins over a year ago and my son developed stage 4 ROP with plus disease. His retina detached centrally in one eye and peripherally in the other. We see Dr. Trese and he had lensecotmy's and vintrectomy's in both eyes. So far his eyes have been stable but like many of you we don't know what exactly he can see. He definitely see's light up close and seems to see shapes/shadows.
  I am wondering, for all the parents who have older children with ROP, how they went about teaching their child to crawl, walk, eat, etc. My son is in physical therapy, occupational theray and speech therapy. We are finally just getting him connected with a vision specialist through the Birth to Three program in our county.
  If you have any suggestions on what more we can do for him, or what you did to help your child, I would appreciate it.
  We are fortunate that neither of our babies had brain bleeds - although he is behind in his gross motor skills I am hoping he can catch up without any other problems.
  Thanks!
  
  
  
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  21 . Re: ROP issues
  Posted by Judith Lesner on 12/12/2010
  
  Hi,
  As the mother of a son with low vision and as someone who had worked in the blindness world for 30 years I will offer my advice. Talk to him! Keep talking. Tell him what you are doing, where you are going, what is around him, what others are doing, etc. Also, play a lot. Joke, tease, tickle, etc. You are his parent not his therapist. My biggest regret is that we spent so much time "therapizing" my son instead of more time playing.
  
  Judith
  
  
  
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  22 . Re: ROP issues
  Posted by DMCCURDY on 12/14/2010
  
  Thanks Judith....that is great advice! I do feel like we are in therapy all of the time, so remembering to have fun and play is a good reminder! Talking to him is also very important - he's a smart boy and already seems to be picking up on things I say to him.
  
  
  
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  23 . Re: ROP issues
  Posted by Judith Lesner on 12/14/2010
  
  Glad the advice seems helpful. When my son was about 4 or 5 his vision person lent him a toy that had beads running on wires and you could shove them around. An adult friend of our admired the toy. Jacob replied, "It is very good for my fine motor movement." Friend was impressed by his use of language but I wanted to cry. He couldn't just have a toy he had to have something that was to improve him. PLAY, PLAY and MORE PLAY!
  Judith
  
  
  
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  24 . Re: ROP issues
  Posted by daveNAPVIrep on 02/18/2011
  
  Sorry for the delay but on the question from December about getting your ROP child to crawl and walk, my daughter has light perception. She is six now but we encouraged her to crawl and then walk through toys and play pretty much like the way we did her sighted brother. She was a few months later in both than he was but for us it really wasn't that different other than we used our voices more than an object to encourage travel. As for eating I just had to learn to allow her to make a mess so she can learn. At six she doesn't make much more of a mess now than her eight year old brother or me for that matter. Learning to eat with a fork and spoon has been a long road though. We allow her to use her hand just a little to get the food on the fork with some types of food. In the early days there were times when I just had to make a joke of it with her and rub food on her and my face just to let her know that it is ok to make a mess as long as you are trying. Dressing and shoe tying are also adventures. Please give us updates.
  
  David
  
  
  
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  25 . Re: ROP issues
  Posted by Judith Lesner on 02/18/2011
  
  Advice from an "old" mother. Do not devote/waste too much time to shoe tying. Think it is a dying art. My son about to get his Masters in Social Work can not tie shoes and it has not interfered with his education at all. Think slip-ons, velcro, sandals, etc.
  Judith lesner
  
  
  
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  26 . Re: ROP issues
  Posted by ashley_ross_2010 on 09/28/2011
  
  My name is Ashley and I'm a mother of 4. However, when i was 17, I had twins (boy n girl/christian n mckenzie) born 23 weeks gest. They both too had laser surgery @ 2mnths of age. and my daughter had already retinal detachment of left eye. 100%. she was seen in Michigan by Dr. capone. nothing could be done for her left eye, he took the lens, and Dr. Capone saved her retina in right eye. my son is dangerously near sighted. Mckenzie has Glacuoma in left eye and has had 2 cataract surgeries in her right! They are now 11 yrs old. & in 6th Grade. She knows her brille and is trained on the cane weekly. Although if you watch her, you would've never thought she can only see in one eye. The dr. says one day she will be 100% blind. In my heart I know God will heal her! Strong believer in Miracles. Although as of now, no cures, we still believe.. until then.. we take it day by day and there's not a moment that I don't feel blessed to have them..
  
  
  

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