Jude Corkery's Journal
Eye Appointment Update
Written Mar 1, 2014 10:30amJude had an appointment with the wonderful Dr. Drack yesterday. It's always a bit of a long day, but it was a good day as well.
Jude had a VEP done. What is a VEP? A Visual Evoked Potential is a non-invasive testing method that provides objective information about the function of the entire vision system. VEP provides a means to measure the complete visual pathway, from the lens to the visual cortex, to detect mechanical or neural abnormalities related to vision. These problems are often subtle and difficult to detect.
We were worried that Jude would not cooperate, but he did well. We were in a copper-lined small room. They put an electrode on the back of his head and on his ears. Then they patched an eye, had him look into a machine and flashed lights at him for several minutes. He did it, with some encouragement from his fan club.
Jude's VEP confirmed that information is not going from his eyes to his brain at a typical rate. So, it confirmed again that his optic nerve is not fully functioning. Dr. Drack wanted to get the data in the system so that we could compare it to future tests. So, it's good to have a baseline, and it just confirms what we have thought for a long time.
They also tested his vision. His best test was 20/100. So at best, he has to be 5 times closer to things to see them. His worst test was 20/600. That would qualify as legally blind (20/200 is where that starts). Dr. Drack wants to document both results in his chart so that we can continue to advocate for more visual services through school.
She believes that Jude needs access to more teachers of the visual impaired and mobility experts. He does receive some services, but she said it's important to stay on top of it. Because Jude has functional vision, it is easy for his teachers (and us) to forget that he needs special accommodations.
We tried to get a photo of his optic nerve. However, the test, machine and technician were not suited for kids. Jude had to sit on a chair on his knees, lean into a machine (but not push on it), place his chin on a bar, keep his mouth closed and open his eyes wide. Then allow a machine to get so close that it could almost touch his eyelashes. That did not work out so well. Maybe next time.
Dr. Drack said that we still don't know why Jude's optic nerve doesn't work well, but she said there aren't many genetic disorders that cause it. She said it's likely just the way that Jude was made.
We remain optimistic about Jude and his future. He is doing really well at school. He is with his typical peers all day now. He receives some special services, and we will continue to advocate for more. He is on track to go to the typical kindergarten next year at Cedar Heights with Lucy. Stay tuned for big things from little Jude.
Thanks and much love for reading along.
Sarah & Chris
Dr. Drack is Back
Written Sep 6, 2013 3:03pmA quick update for the journal (and my memory will thank me later).
We "graduated" from neurology a few months back. I was so excited, but I would only allow us a brief reprieve. I thought, if Jude's medical problems aren't neurological, and they are more visual, who is our go-to doctor? We used to see a peds neuro-ophthalmologist. So I started with him. But he no longer see's patients in the eye department.
So I remembered our wonderful Dr. Drack. She is a ped eye disorder physician. We had seen her previously. Her bio is amazing and can be read here. We called and got an appointment with her.
We hadn't taken Jude to an opthalmology appointment in more than a year. I forgot how long they take. You see the resident. He examines Jude. You see a med student. She examine Jude. They consult with Dr. Drack. They determine to dilate his eyes. They ask you to take a walk for 20-30 minutes for the dilation to happen. Then you see the doctor. She tries to examine Jude. By then, Jude was more than ready to be done. If anyone asked my opinion, they should send in the specialty doctor first, then have all the other people poke at us.
Dr. Drack was not able to tell much about if his vision had changed. She didn't think anything looked worse regarding his pale optic nerve. But she is still very concerned about Jude's lack of vision and what caused his nerve to be pale. So she is asking us to come back in 6 months and we will repeat several medical tests that can give us conclusive data on his vision. That way we will know if it changes for better or worse later. We love how invested Dr. Drack is in Jude. She is really concerned and wants to learn more. I feel better knowing that she is leading Jude's eye care team at the University of Iowa.
Jude's vision is about 20/125. Legally blind is 20/200. So he really can't see well. But he fools people. He has functional vision. Dr. Drack was really impressed with Chris' latest technique to help Jude see. Jude says "I can't see it." Chris takes a photo of it with his iPhone. Jude holds the photo close, and then he can see it better.
Unrelated, we also saw Jude's ENT. Jude has a tube still in one ear from 2010. The other tube has fallen out. A few months ago, that ear was completely filled with fluid. He wasn't able to hear anything from that side. Of course, we didn't know it. So we checked again now, and the fluid was improved in that ear now. It wasn't 100% better, so we go back in January to re-evaluate new tubes.
What a ride. I feel like Jude's professional chauffer most days. But he's getting to be a pretty good traveling buddy. Thanks for joining us on the journey.
Jude's Dr. Joshi
Written Jun 9, 2013 3:02pmJude has been off all seizure medicine for the last three months. We have not seen any signs of seizures and are so grateful. We have seen a big jump in Jude's cognitive development as well. Six months ago he couldn't tell us what he ate for lunch or who he played with at school. Now he can do those things and even tell on his sister from time to time. He is more inquisitive and retells stories to us. It's been wonderful.We have been to Jude's ENT (ear tube) doctor a few times to watch the fluid in one of his ears that isn't draining right. But for now, his doctor doesn't want to put in new tubes. We will re-evaluate in the fall.We also got to see Jude's neurologist for a follow-up appointment last week. Her name is Dr. Joshi and we adore her. She is brilliant and is always two steps ahead of us. She was so pleased with all his advances. He counted for her, named body parts and most of all--he was happy. She said she had never seen him happy before. She said the seizure medicine could be partly to blame for his negative disposition in the past. She said that Jude will still face many challenges, but she didn't think seizures or neurological issues were a primary concern any longer.She said his vision impairment is the primary issue. Jude's vision impairment is due to brain abnormalities in the visual processing center and his pale optic nerve. She said all of this is due to the way Jude's brain was designed. Dr. Joshi said there is no way to know the future, but said she didn't think he'd have long-term cognitive impairment. She did say learning will always be a challenge due to Jude's vision impairment, but more due to spacial relations and what he can/can't see. We were very happy with this forecast to say the least. I asked, "So we'll see you again in ..." and she answered, "Never." My mouth could have hit the floor.We've been told many times that Jude has brain abnormalities and that he would always be followed by a neurologist. So I made sure to ask that we could come back if things changed, and she said of course. She said for now Jude has graduated from her care.Chris and I have been wrapping our heads around this for a few days. When Jude was 15 months old he starting having seizures and vision impairment problems, I searched high and low for a diagnosis. We even took him to Johns Hopkins specialists looking for answers. The doctors told us in the beginning that it's always better NOT to find a diagnosis. Today is the first day I believe them.We are not out the woods by any means. In fact, she said all the speech and occupational therapy are probably why he is doing as well as he is doing, even though developmentally he's still about a year or so behind other typical kids his age.Jude will have many challenges in life both medically-speaking and academically, but crossing one more specialist off our list is worth celebrating. In the meantime we will need to have another follow-up with a pediatric neuro-opthalmologist in the next six months to monitor his vision impairment and it's connectivity to the brain.We feel very lucky to have such great insurance, access to wonderful doctors and most importantly friend and families who are there for us. Someone once told me that children are like trees. They all grow at their own rates, but they all eventually get to where they are suppose to be. It's so great to see our Jude sprouting up right now. We pray he continues to due well. Thank you all again for always asking about our family and keeping us in your thoughts and prayers.