Kai’s RP Diagnosis Story

When Kai was 4 he had a concussion. We took him to the ER and they did a CT scan. We were told to watch him and he was sent home. He recovered right on schedule.

When Kai was 5 my dad came for a 2-week visit. Our home is small, so having one extra person makes a big difference in our routines — changes in rooms, changes in schedules. Kai began having anxiety during this visit. He had a really hard time with “things being different.”  This anxious behavior continued for a while after the visit but calmed back down eventually.

When Kai was 6 he was on a basketball team. We noticed that when he played he would press and pull on his eyes.  It was worse during the games, but the behavior continued. Some days Kai would actually have what appeared to be bruising at the outside edges of his eyes. And sometimes when he was really tired, I’d notice that his eyes would sort of shoot off to the side repeatedly. We took him to the doctor and were told it was probably allergies and a different manifestation of his anxiety.  (We now know this behavior is called the oculo-digital sign, characterized by poking, rubbing, and/or pressing of the eyes and is very common in visually impaired children.) 

When Kai was in 2nd grade, he was hit in the eye by a friend who was playing with a plastic bug. His eye kept watering so I took him to the eye doctor. Eventually, his eye healed up, but the doctor discovered that Kai had a slight astigmatism and gave him a prescription for glasses. Kai chose some cool Ray-Ban frames and LOVED his glasses.

Spring break that year (2011) we went to Oregon for 10 days. While we were away and after we returned Kai’s anxiety seemed to be heightened. He would constantly check-in with us with statements like, “I think I dropped a crumb on the floor.” Or “I think I may have a spot on my shirt.”  Or, “I can’t tell if my hands are really clean.” It was small things but they seemed to cause him a lot of worries. We would respond, “Well, look and see.”  Or, “Call the dog over, she’ll find it.”   We termed this “the worries” and spoke to our doctor about it. I had a deep-down sense that something was really wrong. The doctor asked if Kai had experienced any emotional traumas and suggested that we take Kai to a counselor. We found a great therapist and began seeing him each week — first as a family, then Kai on his own. I was terrified, wondering if something bad had happened to my child.

Next, we noticed that whenever we had family movie night it was as if Kai was watching a completely different show than us.  He’d have questions about who just spoke, who main characters were and seemed to have trouble following the storyline. It became very frustrating for the family to watch TV together.

About this same time, the beginning of 4th grade, Kai began to have an aversion to doing his homework. Previous years he’d run in the door, do his homework right away so that he could go out and play. This year was different. He kept making excuses and couldn’t sit still to finish.  The behavior was very different for him because he’s always been a very conscientious, straight-A student in the gifted program and all of the sudden school work was difficult.  We began receiving reports from his teacher that he would stand at his desk and rock from side-to-side anytime she was writing on the board. (We now know that this is called “scanning” and it was his attempt to build a full image.)  

Over Christmas break, I was watching him read something, and I noticed that he was really close to the page and would either move his body or move the page as he read.  A little later I noticed that when he was writing, he’d start in the middle of the page. I kept asking him about it, but he didn’t seem to know why he was doing it. Then my husband and I pulled out samples of Kai’s writing from the previous years and noticed that his writing had become a lot larger and messier.  The more I observed the more I thought: “I don’t think he can see.”

Kai is super competitive and loves to be timed so I said, “Kai go grab your book and read a page as fast as you can!”  He was excited, grabbed his book and started reading. 12 minutes later he was in tears. He couldn’t read the page. He had to keep reading and re-reading the same words. He didn’t know why, but I knew something was terribly wrong. In the past, he could have read that page in a couple minutes. He’s always scored really high in the Accelerated Reading program at school and he’s done well on standardized tests.

He’d been having regular eye checkups and wasn’t due again for a few months. But, I took him for an extra vision exam over Christmas break.  Mid-test, the doctor began to look concerned and said that he couldn’t correct Kai’s vision to 20/20 anymore. The best he could get was 20/100. He referred us to a pediatric ophthalmologist in Savannah.

We waited a few weeks for that appointment. By the time we were there, I was certain that Kai wasn’t seeing well. We explained our concerns to the nurse who was doing his initial vision test. She told us that she had been doing her job for a long time and that Kai’s answers were “not consistent.” She believed that his issue was behavioral. I was so angry. She didn’t know my son, and she didn’t realize that he gives everything 100%.

The doctor came in and he was wonderful. He spent some time talking to us and looking into Kai’s eyes and he said that he’d schedule an MRI just to “check things out.” He also had Kai take a field of vision test. Kai’s results showed that he had a very narrow field of vision, but we were told that a lot of times kids don’t cooperate with the test. No big deal.

A few weeks later Kai had the MRI with contrast. He had never had an MRI or an IV before, but he handled the whole procedure very well. The tests came back showing that Kai had a Sphenoid Sinus infection. So, we were sent back to our regular doctor to get the infection treated. I had read online that when sphenoid sinus infections are bad they can put pressure on the optic nerve, so I was sure we had our answer.  Two rounds of antibiotics and a CT scan later and the infection was still there. At this point, we were sent to a pediatric sinus specialist.

The sinus specialist had me get records from Kai’s CT scan taken when he was 4 and he compared it to the current one. He said that Kai had the infection when he was 4, but that it was worse now. He said that the infection has nothing to do with Kai’s vision and that it would eventually “clear up on its own”  I thought this was strange advice – if it will just spontaneously “clear up” wouldn’t it have done so by now?

Since Kai was still having what we thought were vision problems, the ophthalmologist ran more tests including another field of vision test. Again, the field of vision was narrow, but we were told that a lot of times kids “goof” on it. I knew that Kai wasn’t the type of kid who would mess around on this, so  I was thankful when the doctor said that he’d send Kai to a neurologist and set up a retinal scan “just in case.”

The neurologist interviewed us and did a basic exam on Kai. She reviewed his MRI and CT scans and reported that she thought he was “just fine.”  Probably just a phase and that sometimes smart kids with “anxiety” will have visual manifestations – tics of sorts. She thought we should “just ignore it” and he’d grow out of it.  She called it “hyper-focus” and looking back I’m not sure if she thought that Kai was hyper-focused or if we were!  But all and all, she was very kind and made us feel like everything would be OK. She thought it would be smart to have the retinal scan, just in case, since it was already scheduled.

Finally, we got to the retinal scan, called an ERG. At this point, Chris and I were wondering if we should even put Kai through it because it is a painful test and so far all the doctors (except our counselor) thought that Kai’s symptoms were behavioral.  Deep down we just knew something was really wrong. Kai had always given everything his best and we trusted him when he said that “he didn’t know what was wrong” but that he “wasn’t misbehaving.”  The ERG was truly awful for Kai. AWFUL. But, Kai got through it and it finally gave us the answer.

A week later I got a call that the ERG showed deterioration in both retinas. The doctor’s tone was so severe that before we hung up I asked him, “Are you telling me he’s dying or that he’s going blind?” Blind he said. The ophthalmologist thought it was probably something called Retinitis Pigmentosa (RP). He sent us to a Retinal Specialist next. The specialist did more tests, scans, and took photos of his retinas and confirmed the findings: RP = progressive, no proven treatment, no cure. He was diagnosed on April 10, 2013. It had taken several years to find the answer.

Interesting enough, as bad as the answer was, Kai had NO ANXIETY once he realized that he couldn’t see. He always knew that “something was different” but he couldn’t explain it. Now he could. Now he had words for the mystery. We’d hear him tell people in a matter-of-fact tone: “I can’t see.”  The truth was that by the time Kai was diagnosed he was already legally blind due to a restricted visual field. It was devastating to our family. (We have since learned that when vision loss is progressive, oftentimes, the person being affected doesn’t know it’s happening, until it gets so bad that it can’t be denied.)

Parents, BELIEVE your gut. If you think something is wrong and you are not getting answers that resonate in your heart – keep searching. Do not give up!

This was a frightening diagnosis, but at least it put us on the path to acceptance and we were able to get access to the resources Kai needed to successfully transition to a life that includes vision loss. Now, six years later, Kai is thriving. He’s mainstreamed in public high school. He utilizes braille, a Braille Note Touch, a laptop, Jaws screen reader, an iPhone, and iPad to access content and materials. He walks with a mobility “white” cane and is awaiting a match with a guide dog. He’s a drummer in 3 local rock bands and he is the world’s first legally blind skimboarder. He currently has less than 5 degrees of blurry sight. He doesn’t see details and describes his vision as light perception and contrasts.

To learn how Kai got from diagnosis to thriving, please stick around and read more of my blog. I’d recommend starting with my post titled “A New Way to See.” Check out the features page for some videos and newspaper articles and please feel free to reach out to me directly by utilizing the contact form.  I enjoy speaking with parents of kids who are blind or visually impaired.

Also, if you have a diagnosis story that you’d like to share on my blog, please let me know. Let’s navigate blindness together. Thank you, Kim Owens