Jude Corkery's Journal
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.
Jude's Dr. Joshi
Written Dec 6, 2012 9:31amThis is the first year that Jude is excited about Christmas. He loves our tree (and taking off the ornaments), he tolerated seeing Santa and knows he might be getting some Thomas Trains out of the deal. We took Jude to the Iowa Braille School for a holiday gathering last week. We met a bunch of really nice families with kids that have vision impairment. We played BINGO, made crafts, sang songs and Jude ran around like crazy. We are very grateful that this group of people made such a special day for kids like Jude. This photo is from that day.We also love Dr. Joshi, Jude's neurologist, and saw her yesterday. We talked to her about our visit to Johns Hopkins. She agreed that we'd be smart to wait and see if genetic tests make sense in 5-10 years. She said by then the test where they are able to do whole DNA sequencing will be more cost effective as well. It's about $10,000 now and she predicts it will come down to about $1,000 by then.We are still going to see another genetics doctor on Dec. 20. It was scheduled 9 months ago, so why not. She said we may want to put Jude on a "cocktail" of vitamins to treat him "as if" he had a mitochondrial disorder "just in case". We'll talk to this genetic doctor about this idea.She also said his vision problems are complicated. He does have a brain abnormality in the occipital lobe area. That is where visual information is processed. But she said it's a "chicken and egg" situation because of his pale optic nerve. She said if the nerve was damaged, it could have caused the brain abnormality near the occipital lobe because it wasn't being used. Or the occipital lobe damage could have caused the optic nerve to become pale because it wasn't being used. Either way, we know he can't see well. And we are doing what we can to help him use the vision that he has to reach his potential. And it's important to remember that Jude doesn't know/understand that he can't see well. He thinks everyone sees as crappy as he does :)The big news is that Dr. Joshi feels we are ready to wean Jude off his seizure medication. This is a slow process and will take three months. And he has sort of already started this process since we have been on such a low dose for two years and he's grown quite a bit in that time. She said we have about a 50% chance of seizures reoccurring within the first year. If we can make it a year, then it drops significantly. She feels he deserves a chance to find out if he has outgrown the seizures. Dr. Lipkin from Johns Hopkins was very optimistic that Jude would outgrow them. We know that Keppra (the medicine) can make kids emotional. And Jude can be very emotional. She doesn't want his behavior to affect his ability to learn and be social. She also wants to try this before he goes to school full time, so we can keep a good eye on him.Chris and I are excited and scared at the same time. I hope I never see Jude have another seizure. They are plain scary. But she said not to panic if he has one. We will call her if that happens and he can go right back on the medicine. It's also scary because we will have to really be vigilant about his safety for the next year. We have to assume he could have a seizure at any time. We will have to have him at arms length while climbing on playground equipment, swimming/bathing, etc.She said yesterday was the best she's seen Jude. He showed her how he could draw on the chalk board. He could identify his colors, letters and shapes. He was talking a lot more. And he was sort of nice to her, which is amazing for any doctor. She was cautiously optimistic about his long-term development. She said from 0-5 years old is really a critical time for development, so we feel all the extra time we've put in for therapies is paying off.Thanks for tagging along with us on this journey. Have a wonderful Christmas!