Brian’s Story: Submitted by Mom (Kelli)

Brian’s story begins at the age of 7, when we realized he was not seeingfrom a distance. He has an older sister who was found to be nearsighted atthis age, so I told him he would get to pick out some glasses the day I tookhim to our ophthalmologist.

After the nurse was unsuccessful in finding the right prescription, the doctor examined Brian and in front of him said, “well, he’slegally blind. “There are three possible reasons”, and he spoke as if readingfrom some text. Then, he asked several times, if we had any blindness in our

family and other than macular degeneration, we do not. They made anappointment for us to see a pediatric ophthalmologist the following week.He and the nurse walked out of the office and I was left asking “Doesn’t heget some glasses?” The nurse tersely said, “Oh no, that won’t help!” And continued to walk on. I busied Brian with a toy table in the waiting roomand walked to the nurse’s station to ask questions, but didn’t even know what to ask. They told me he didn’t see color at all.

By this time I was so confused. We got in the car and while I wasreeling, I realized my 7 yr. old had heard that he was legally blind. Ofcourse, what he understood was that he was blind. I don’t know if he willever get over that pronouncement. His dad and I both tried to explain thedifference between being legally blind and being blind. Soon I began to seehow Brian was already an expert at compensating, without knowing what he wasdoing, For instance, I had just bought him a little lap-sized pool table and I heard him explain to his cousin that he had memorized the numbers on theballs by their color. When you played with him, you had no idea he wasn’t reading the numbers. I also began to see that I had been his eyes much of the time.

When we went to the pediatric ophthalmologist they did an exam and partialERG, but only got results on the rods, which were functioning normally.Brian couldn’t tolerate the device any longer, so we never found our abouthis cone function of the retina. The only conclusion they came to was that he had oneform or another of a genetic degenerative disease. They said to come backwhen he was 10 and they could probably get better data.

I came home to begin my study about RP, Stargaardt’s, cone-rod dysfunctionand all the rest. I had no idea what to do with a child with low vision, butthe public librarian sent me to the library for the blind, who sent me tothe department of human services, who sent me to the public school vision teacher (I homeschool Brian). I began to read about low vision andblindness. The vision teacher and I decided to introduce Braille, believinghe was destined to blindness.

Our ophthalmologist recommended a certain seasoned ophthalmologist in adistant city to get a more definitive diagnosis. This doctor was the firstto find floaters. From the fluorescence angiogram, he concluded that Brianprobably did not have one of the degenerative diseases. He sent us home todo a short course of prednisone. This improved Brian’s vision from 20/200

to 20/100 to 150. It wasn’t much, but it did show that his condition wasinflammatory in nature and not genetic. Brian perceived a big improvementin his vision. He was happy to have a name for his disease, pars planitis!

After all the blood tests and chest X-ray, thankfully he fell in the idiopathic category. We were happy to think he was not necessarily going tobe blind. The only prognosis we got was that the disease burns out inadulthood, and were told that some people get improved vision and some do

not. This seemed so much better than what we had been thinking. Then, mystudy took a turn into uveitis, a whole new world!

The next spring he flared and we did another short course of steroid. After observing for these 3 years, he seems to have his worst flare in thespring. His vision continues to fluctuate between 20/100 and 20/200, withsome pulling away of the vitreous base and the resultant flashing lights,

and I believe, epiretinal membrane. He says his vision has always been likethis, but he has never had a hint of nystagmas. He did tell me his visionis clear in some of his dreams. We will never know how long he had thiscondition before we found it.

Kelli

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