anyone with CVI child

Prachi - posted on 01/10/2010 ( 9 moms have responded )

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Hi my son has CVI .
he has visual and motor delay. He seems very much behind as compared to the children born along with him. So a little worried. Doctors say his vision will be better . wanted to know if somebody has had a similar problem

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Cassandra - posted on 01/13/2010

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My daughter was recently diagnosed with CVI. She also has cerebral palsy and optical nerve atrophy (she was diagnosed with that 6 months). At six months the only thing they could tell us was that she was seeing light, but they did not know if she was able to translate the images into anything. She did not track, or pay attention to toys. Two years later, Isabella still has significant delays, but she is getting better. She can now track toys that light up, or are shiny. The best advice I can give you is that every child is different and deals with delays differently. I don't believe that it is an all or nothing sort of deal. I would see what objects interest your child (shiny, light up toys, or even toys with noise) and start playing with those. A vision therapist can give you some advise on different activities to help stimulate his vision. There is a lot of information out there on the internet. I would also suggest finding a website that sales toys for children that have special needs or vision problems. I personally found some great toys from a site called playworks.net. They have a section for developmental delays and vision stimulation. I know this is all a little overwhelming right now, but it is not the end of the world. The human brain is an amazing thing that can compensate for physical impairments. There is also a lot of research and medical advancements being made in vision. I hope this helps!

Sheila - posted on 03/11/2011

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My daughter has CVI and is delayed. She can walk with kwalker but not by self yet. She only says a few words. Maybe we can talk to help each other.

Salma - posted on 12/17/2010

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Hi my 17 month old son Kabir was just diagnosed with CVI on the 6th of this month.He has Microcephaly with seizure disorder,hypothyrodism,Diabetes insipidus,He is very delayed has not hit anty of his milstones any advice or ideas on activities or products he might benefit from will be appreciated.Thank you.

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SHEILA - posted on 12/20/2010

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Hi Salma,

My little girl is 16 months and same problems..vision was a problem and not hitting any milestones like sitting,crawling etc. It is quite a challenge to come up with activites for them but here are a few i tried...

- take to the pool for a swim. I go when it's really busy so there is a lot of noise and stimulation. I also use either the life jacket or float tube so child can get more support and explore movement by themselves

- To the park and sit in swing, the motion stimulates them

- Try an exersaucer that bounces, so it stays in one place but they can get some exercise and explore movement

- Tummy time with child slightly raised up,there is a beetle type body holder that you can place the child in (the child would be facing the floor).They are essentially on tummy-time but have the hands and legs more free to explore movement

- If you place on baby gym (the one where they lie down and face up to the toys)...I would limit the number of toys so as not to seem chaotic to child, and I would put them with head support which helps with the vision

- Products ...anything that lights up and makes music would be great (one product is called a GloWorm , their face lights up and they play music)..

Hope that helps, do message me anytime if I can be of help.

Mary - posted on 11/20/2010

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i am an early shildhood teacher of the vision impaired. CVI is quite the umbrella term, and most kids who get specific vision therapy will improve up until about age 6 or 7. Be sure you have a vision teacher that has been trained to work with CVI shildren and there is a lot of info available on the internet. keep encouraging your son everytime he seems to look at something so that his brain associates looking with positive praise! vision is learned, it does not come automatically, so keep pushing lots of visual stimulation and play with objects that are sparkly, black and white, flourescent and get a light box from your local vision program.
mary consani-kramer

Maria - posted on 10/05/2010

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Hi, my daughter will soon be 18 months old. She sees Dr. Roman in Pittsburgh - a CVI specialist. Dr. Roman says vision WILL IMPROVE! It already has - Lizzy went from 2.5 to 3.5 (10 being best in this case) in 6 months time. We use mostly dollar store items - the same few over and over - solid color, shiny things - red metallic party hat, gold foil paper that we wrapped her dangle toy for the car seat in, etc. We got a free mini light box from blind and visual services in our area. We cut a heart shape in the middle of black construction paper and put the shiny paper behind it, or put the constr paper on the light box so that just the heart shines through, that kind of stuff. Lizzy also has CP and a VP shunt for hydrocephalus. Thanks for posting, I liked to read what others wrote too!

Heather - posted on 01/12/2010

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Jacob is almost 6 and has CVI. He has a vision therapist from Perkins School for the Blind on Boston, Mass. He was diagnosed when he was about 6 mths old, I think. Since then, he has progressed from 10 (being the worst possible score on the test) to about a 4-5 on the scale. His therapists are encouraged that it may still improve, slowly, of course, over the next few years. My son likes sparkly things, black/white patterns, and red and orange colors the most at first. His eye contact was minimal, and fleeting at best. He can now look at other colors and maintain eye contact for up to 30 sec at a time. We found that swinging ot bouncing, that kind of movement helped him orient better, which seems to be common in CVI kids. It's a long, slow road, but it can get better!

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Cortical vision impairment doesn't get better. My son has this and there isn't much you can do to fix it. Vision therapy can help them learn to use what vision they have. It was explained to us like this. Imagine looking through a piece of swiss cheese. You see holes here and black spots there. That is what their vision is like. My son does have some vision but we don't know how much. It's obvious to us when he does see something because he is still and focused. He is usually very active and doesn't stay still for long unless he is seeing something or sleeping of course. He also has other issues that he deals with like cerebral palsy and seizures so he is very much behind for his age too. I would check into any vision services available in your area. They can give you some good suggestions to work with your son. Good luck.

Heather - posted on 01/10/2010

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My son has CVI. What questions can I answer for you? Leave me a msg on my COM profile.

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