Last Spring, Rose suggested we have a vision test called Visual Evoked Potential (VEP) performed on Owen. This would allow us to have a better understanding of what he can see. Owen's eyes were tested when he was hospitalized as a two month old and structurally they are fine. We know this is a problem with the brain and how it is processing the input it receives from the eyes- cortical vision impairment. There are small clues Owen give us occasionally that make us question whether he might have a small bit of vision. Our assumption is he can see brightness- for example, if he is in a dark room and you turn on a bright light, he might squint his eyes.
To clear up the guessing game, I made an appointment at Children's Hospital Boston with a highly recommended Ophthalmologist to have Owen undergo a VEP test. This test is done by placing electrodes on Owen's head and then recording the signals they receive as different lights and patterns are flashed at him. The results are then interpreted by the doctor. It would give us an idea of how much information his brain is receiving from each eye.
It took six months to wait for the test, but his appointment finally arrived this past Wednesday. Finally, we were going to have some concrete information about Owen. This test was one that would actually provide us with results as opposed to the numerous question marks we are often left with after testing Owen. Eager for information would be a mild way of describing how Pete and I felt in anticipation of this appointment.
In my last post, I discussed our attempt to wean Owen off one of his medications. Clearly, it wasn't going well and we had to change the way we were weaning him. His manic behavior - as described in our outing to the library- was actually withdrawal symptoms. We have adjusted the dosing and he has stabilized. This is a good thing, but he is back to sleeping a lot- and that is what he decided to do during his VEP test. I could not wake this child for the life of me. I undressed him, I placed a cold cloth on his head, I changed his diaper, I put an ice cold bottle on his bare toes, I passed him off to strangers to hold him awkwardly, I put him down on a hard surface with nothing cushy around him.... I did everything I could short of hurting him to try to wake him up.
After more than an hour, I had to give up hope that we were going to do the test. Instead, the doctor dilated his eyes and performed a routine eye exam. During this exam, it was noted that his retinas are slightly abnormal. They are thinner then normal and also discolored. This made the doctor want to perform an Electroetinogram (ERG). This procedure is usually done under anesthesia since it requires children to have contact lens-like electrodes placed on their eyes. Given how sleepy Owen was, the doctor thought it might be possible to perform the test without sedating him. We scheduled it for the next day. Owen behaved appropriately and did complete this test.
The main reason the ERG test is important is because it might be a clue to Owen's disease. There are some white matter brain diseases that also include damage to the retina. By having a clear understanding of how Owen's retinas are functioning it could possibly be a marker for his disease and narrow the focus for his geneticist and neurologist. We will get the report in about 10 days. I left with the impression that Owen's retinas are abnormal, but not significant enough to play a major role in his disease.
It was a stressful two days spent at the hospital and we left with no new information...sound familiar? I dream of the day a doctor will sit us down and make a definitive statement about Owen that will give us an answer to the many questions we have about our little guy. The unknowns are very frustrating and discouraging.
After the exhausting medication withdrawal week, Owen has been doing well. He managed to visit a park and listen to Ellie play, he took a nap in his stroller at the neighbor's house while Ellie played with friends, he joined us for our daily trek over to another neighbor's house to feed the horse, goat, and puppy, and today he is going to help Ellie and his dad carve a pumpkin. I am eager to see what Owen thinks about the way the inside of a pumpkin feels!
 |
| Here is a picture of Owen sleeping in bed this morning. By the blanket you will see a toy onion that Ellie gave to him. We often discover, after picking him up, a toy placed next to him from his sister. When I asked Ellie about the onion, she told me that she had cooked Owen eggs for breakfast. She is a pretty awesome big sister! |
No comments:
Post a Comment