We had our 6 month follow-up with the eye doc. Saying it didn’t go well would be an understatement.
Let’s start with Paige. Her prescription didn’t change. She’s still a -6 in each eye. I’m not sure I’ve mentioned this before, but Paige has Nystagmus. Nystagmus is an involuntary shifting of the eyes. Basically Paige’s eyes shift uncontrollably left to right. Here is a video of what it kind of looks like (note: that’s not Paige’s eyes, but some random person). When Paige is stressed or really tired, the shifting gets a lot worse. Another side effect of this condition is something called the null position. Basically since Paige’s eyes are in a constant state of motion, she’ll tilt her head to compensate. So instead of looking straight ahead at something, she’ll tilt her head up and to the right to compensate. There is no cure for Nystagmus. There is a surgery where they detach and reattach the eye muscles that help stabilize the eye movement and help correct the null position. If Paige’s eyes keep getting worse then we’ll probably be having some sort of surgery in the next 6 months. The past month her eyes have seemed to have gotten worse.
Then there is Cole. Cole’s prescription has become much worse. He’s now a -10 and a -6. The doc thinks he may have glaucoma. I just started reading about glaucoma tonight and I can pretty much tell you it scares the shit out of me. There are so many uncertainties from this potential diagnosis. Here we go again talking about blindness. Not in a million years would we have thought we would be talking about Cole like this. For the doc to correctly determine if he does have glaucoma, he’ll probably be going under general anesthesia next week. Since there are so many long term issues with not treating glaucoma early, we are trying to get that surgery scheduled ASAP. On the flip side, if he doesn’t have glaucoma, he’s becoming super nearsighted which is also very concerning. You can choose extreme nearsightedness behind this door or you can choose what’s behind the mystery door…both are a losing proposition. If he does have glaucoma, he might have to have tubes in his eyes the rest of his life and manage the disease with drops. I have no idea how that would work. Anyways, the course of treatment will be decided once we get an official diagnosis. As it stands now, with his nearsightedness, Cole’s legally blind. Not sure though as he seems to see things just fine. Everytime he rubs his eyes, is it because of the pressure? Is he in pain? Could this be anymore confusing for us as parents?
During the first year of life we were left wondering what the long term outcomes of P & C were going to be. As we have watched them grow, I have to say thoughts of what they won’t be able to do has escaped my mind. Now they all come flooding back with one little doctor’s appointment. Sometimes being a parent sucks as there are so many things pertaining to your child’s well being that are so far out of your control. When is it supposed to get easier?
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Oh wow. We had to have surgery on Kyra’s eyes for some issues, but having two kids with issues must feel a little overwhelming. The good news is that kids compensate in ways that we don’t even notice most of the time.
Hi. As daughter of two adults with glaucoma, I know the following. Eyes high pressure can be cured by inserting a lens that has three small pins. When the eye swells, the pins exert pressure, make the eye release tears, and then the pressure goes down. On adults this can be placed in the eye in just a few minutes, and it is painless. Eyes are so important, so I would make sure to get a second opinion from another really good eye doctor before doing surgery, just to make sure there’s consensus. I would recommend ours, but he is in Milan, Italy.
I don’t have any advice or experience with Nystagmus or Glaucoma, but just wanted to echo your post that this news truly sucks. I will be thinking about your kiddos and hoping that the opthamologist that is treating the kids will do their best at helping you find out what needs to happen next.
Wow.
This might sound really stupid, but I’ll just throw it out there anyway. By any stretch of the imagination, can you link P’s nighttime tirades with her eyes? Maybe she feels bad (clausterphobic, weird images) at night because she’s freaking out and her eyes get worse in that condition? I’m guessing she keeps her glasses on part of the day, and off at night, so the condition would worsten. Combined with the dark, could be a triggering combination.
Good luck with C’s diagnosis next week.
Viscouse - I guess it’s possible, but she’s had these eye issues her whole life. I should point out that she does her freak out during daytime naps as well.
All I can say is WOW! And I am super impressed with the way you guys handle everything you are given to deal with. Those kids are blessed to have you as their parents.
Wow, I didn’t check your site for a couple of days and read this update about their eyes. I am so sorry you are going through this again. This is experience from my end. My sister is legally blind without her glasses but with her glasses she is perfectally fine and can do anything that she wants. My cousin in also legally blind but his can not be corrected but he still can do amazing thins. Of course he can not drive a car but that has never stopped him from going places. He is also a computer GENIUS so for a person who is blind to see a computer screen is pretty amazing. He only sees shadows, no color and nothing is ever in focus. His eyes also do the shifting thing but his is all the time.
Suzan
Eric and Tobey,
I am sorry you and the kiddos are going through all of this. I will be thinking of you guys.
-Shannon
I’ve got nothing to offer but support. It just plain sucks that after everything you’ve been through, now you are dealing with all of this. Let me just say for the millionth time: PREMATURITY SUCKS!!!!
I am so sorry you aer going through all this!!! I will pray for you guys. My cousin has Nystagmus, but much more severe then the video. So I know what it’s like to know a child with that, and he tends to freak when he is tired, so maybe that’s what’s causing all this behavior stuff. But he doesn’t have glasses so I don’t know…. I hope everything works out for you all and everything will be okay.