Happy Friday! Madison has been teething hardcore this week, awake at all hours & hating all food, but she’s finally napping so I thought I’d continue my “Meet Madison” series with another one of her diagnoses: Cortical Visual Impairment.
CVI is a condition in which there is a decreased visual response due to a neurological problem affecting the visual part of the brain. According to the American Association for Pediatric Ophthalmology & Strabismus, someone with normal vision uses their eyes to take a picture of an object. This message is sent to the brain through optic nerves, and the brain then recognizes the image, integrates it with other sensory messages, and sends a motor response to the appropriate part of the body.
With CVI, the eye takes a picture of an object, but the message that gets sent to the brain is then not properly processed or integrated due to abnormal brain function. The eyes are able to see, but the brain is not interpreting what is being seen. Most kids with CVI, including Madison, have normal eye exams since their physical eyes are not the issue.
According to Little Bear Sees, a leading website in CVI information, the following are characteristics of CVI:
- Preference for a specific color. Typically, bright red or yellow. In Madison’s case we have found that she focuses the best on things that are yellow.
- Need for sound or movement. Items that spin, move, or are noisy tend to grab the attention of CVI kids. Madison loves musical toys!
- Delayed response when looking at objects.
- Difficulty with visual complexity. Simplicity is key for CVI kids! It’s important to create an environment that makes it easy for kids with CVI to focus on the objects or object at hand. Creating a black background with single colored objects in front of it is a technique commonly used. This helps to reduce visual clutter. Just like black and white toys are commonly used with growing babies since they focus on the contrast so well, this mindset is continuously used for kids with CVI. After Madison’s diagnosis we focused on swapping a lot of her toys for high contrast items, including some books, her mobile, sensory toys, and her play mat.
- Light gazing & non-purposeful gazing. Kids with CVI often stare at lights or may appear to look at things that are not there. We use a light box with Madison which is a flat tablet that contains an electric light, providing an evenly lighted flat surface. We then use solid colored translucent toys on the table to help her focus. We also use a lot of toys that both light up & play music. Some children with epilepsy cannot use toys with flashing lights, but we have found that these do not trigger Maddie’s seizures, and that she actually tends to prefer them to other items.
- Visual field preferences. CVI kids may prefer to look at objects in a certain direction. Madison for example, favors her right and typically turns her head to the right to engage with us. She also seems to use her vision more when on her back or sitting up with toys at arm level.
- Distance impairment.
- Visual blink reflex is absent or impaired. If an object was coming towards your face, you would blink as it gets close. Kids with CVI have an absent or delayed response to an action like this.
- Preference for familiar objects. Since processing information is difficult, kids with CVI may prefer familiar objects that their brain has already recognized and processed before.
- Impaired visually guided reach. The ability to both look and reach for an object is often impaired.
Although CVI is one of the most common reasons for visual impairment in children, it often goes undiagnosed since the structure of the eye is typically normal. Madison was diagnosed early on because we knew she had an underlying brain injury. Dr. Roman-Lantzy, author of Cortical Visual Impairment: An Approach to Assessment and Intervention, divides CVI into three phases. In Phase 1, most CVI characteristics are present, but as a child progresses through the phases, these characteristics begin to resolve. With appropriate intervention, CVI CAN improve. Treatment is crucial at a young age in order to maximize improvement.
It might sound strange, since Madison’s endocrine & epilepsy issues are so complex & more of a priority to correct, but CVI has honestly been one of the harder diagnoses for me to deal with. I have dreamed of having a child my whole life, and it kills me that she only rarely makes eye contact with me. I have 10 days of memories of her sweet face locking with mine that I hold onto dearly. I hope more than anything that we can improve her vision, and get her looking directly at us again. In addition, even though she was diagnosed early on, I have found it difficult to really get her the help she needs with her vision because she has issues with alertness and sleeps quite often, making it hard to work on her eyes. Many vision therapists are also not very well versed in CVI specifically.
Because I feel like we can be doing more, we will be meeting with a neuro-ophthalmologist at CHOP at the end of the month to get a second opinion, since Madison currently only sees a pediatric ophthalmologist. We actually had this appointment scheduled already, but when we wound up in the hospital with rhinovirus we had to cancel. I’m hoping a doctor who specializes in neuro-eye issues, will have more insight. I’m also hoping to get us an appointment with Dr. Roman who specializes in CVI, in the next year.
Below are 2 pictures that aren’t anything glamorous, but were taken before Madison got sick. I love them because she is looking right at John & I! I pray for the day she will be able to do that again more consistently, but until then we will just have to enjoy being able to look at her, and cherishing the moments when she does make eye contact! And as a reminder to other special needs parents, remember YOU are you’re child’s advocate. If you ever feel that more can be done to help your little one, seek a second opinion, do your research, join support groups, and ask questions! Never stop educating yourself on your child’s needs and always push for more! Enjoy the weekend everyone!
September 10, 2018
The longing for Madison’s gaze to steady and meet yours and John’s as it did in the early photos you post is so tender and vulnerable, like your girl. Whenever it happens I expect you won’t remember how long it took!
Thinking of you all daily.