Friday, December 15, 2017

[Eye] needed a second opinion

Ryan has been seeing the same pediatric ophthalmologist since he was released from the ROP doctor back in 2015. I was fairly happy with him, although I would leave the appointment with the overall gist (i.e. Ryan did not need glasses), but had no idea about any of the actual details. It was all a little over my head and I didn't feel like it was explained in layman's terms. Also, his teachers and therapists continued to ask me whether I was sure that he didn't need glasses. He continues to get very, very close to objects that he's interested in. If he's liking the book I'm reading, he'll crawl right up to it and put his face so close to the book that I can no longer turn the page! The therapists and teachers all felt like it was a vision issue and that he was getting so close so that he could actually see it. They even gave me a name of another Doctor that they recommended who they felt like might prescribe him some glasses.

Each time I would go to the eye doctor for Ryan's appointment, he would continue to tell me that Ryan did not need glasses. I didn't want to insist that he get them (I mean, I don't really want him to have them!), but I was at a crossroads. I wasn't sure who to believe or what was the right thing to do. I had heard recommendations, as I mentioned above, for another pediatric ophthalmologist, who was prescribing glasses for kids that Ryan's doctor had said the same thing about. I figured that I might as well go for an appointment and just give it a shot and see what she had to say. It took about 6 months to get an appointment so it felt like it took forever until we got to see her, but we finally got an appointment at the end of October.

The first part of the appointment went well. We were in a room with a nurse and I was answering questions about things he does do, things he doesn't do, tendencies, diagnoses, etc. The nurse was doing some basic tests and putting images on a screen for him to see. The difficult part is that since Ryan is non-verbal, he can't tell us what he can or can't see. We can't rely on his cognition to provide us any clues into his vision abilities. It's challenging. Anyway, I'm sure Ryan's not the first non-verbal kid with neurological issues that they've seen! After the session with the nurse, we went to a little waiting area right next to the rooms where patients are seen. Not long after, we got called in to do some initial testing with Dr. White. She was very, very thorough. She was using toys to try to get Ryan's attention and see how he tracked, and how his eyes responded to certain stimuli. I didn't have a clue what she was doing or what she was able to take note of, but was just observing and holding on to Ryan. At the end of this part, they wanted to dilate Ryan's eyes, which consists of putting a few different drops of liquid into each eye. The first round, he was fine. The second round, he started getting upset. The third round, he started crying and the fourth round of drops did him in. The nurse told us to go back to the waiting area right outside the door and I was holding Ryan and trying to get him to settle down. If you know Ryan pretty well, you will know that if he gets upset enough, he will make himself gag. It's not really all that uncommon when he gets upset, but he rarely gets upset. So I'm holding him close and walking to the waiting area and he vomits all over the both of us. I couldn't put him down because I didn't want to get vom everywhere. The nurse noticed and immediately escorted us to the restroom. I had to sit him down on the floor of the public bathroom. Yes, that actually happened. I literally had to take off his shirt and jacket and run them under the sink to get to throw up off, as his top half caught most of it. I took a wet paper towel to wipe off his face, hands and jeans. After I got him mostly cleaned up, his shirt was soaking wet, so I just put his jacket on and zipped it up. All this time he's still sitting on the floor of the restroom at a doctor's office, because I needed both hands to clean everything up. UGH. Then I had to get myself cleaned up, since I had throw up on my sweater and in my hair. Sweater came off and had to get run under the faucet as well and then I had to bend over sideways to put my hair under the running water to try to get it all out. To sum it up: we looked like drowned rats, were cold and smelled something awful. It was definitely NOT a good experience. I know you must be thinking, "why didn't you just go home and change, crazy lady?!?!?!" Well, honestly, the thought crossed my mind, A LOT, but it had taken us 6 months to even get an appointment. We were halfway done and I didn't want to wait another 6 months to get back in there. Our house is a good 20-30 minutes away from the office so I knew they wouldn't hold our spot for us to come back and finish the appointment. I wanted answers and didn't want to waste another day on another appointment, which may or may not have the same vomit results from the eye dilation.

So after I did my best clean-up job, we went back to the waiting area. I tried to sit as far away from other people as I could and prayed that no one could smell us from where they were sitting. YUCK. I got a nurse to find me a plastic bag to put Ryan's shirt in so I could take it home and wash it.

Sweet boy with dilated eyes and no shirt on

t-shirt in plastic bag evidence
When we got called back in to see Dr. White again and finish the appointment, I apologized for our appearance/smell and we just continued on as if nothing was wrong. I'm sure they were ready to get us out of there! I couldn't wait to get done and get home. My sweater was all wet and stuck to me. Ok, let's move on....

Apart from the "incident" describe above, the appointment was really good and I really liked Dr. White. I'm going to continue taking Ryan to see her. She spent a lot of time with us, probably around 1 hour WITH her, not including waiting time and nurse time, and not only was she thorough with the exam, she was very detailed in her discussion with me to help me understand what is going on.

She does think Ryan is visually impaired, but it's a cortical/cerebral impairment, not an issue with his actual eyes. It's called CVI - cerebral visual impairment. It's mainly the way his brain is processing what his eyes are seeing. She thinks the biggest issue is his peripheral vision.  It was interesting to notice that he could see toys and objects right in front of him, but wouldn't notice it at all if she held it out to the side. Dr. White suggested orientation & mobility (O&M) training for Ryan. I've mentioned that to his therapists, but haven't heard much back yet. I need to follow up on that! I'm not yet familiar with O&M but it sounds like I might be learning about it soon. She gave me a link to learn more about CVI and a suggestion to watch a specific educational video on the website (that I have yet to do #momfail). Writing this post though as reminded me about all these things that I didn't immediately follow up on and it's rejuvenating my intentions!

Dr. White said Ryan's eyes are coping well right now, despite some mild scarring from ROP and mild hyperopia with astigmatism (poor guy), but she also did NOT recommend glasses. So that part was actually on point with the other doctor and I was secretly relieved. I feel good about having 2 doctors saying the same thing, so we can avoid glasses...for now anyways.

We have a follow up appointment in 6 months and I've cancelled our follow ups with the other doctor, since I was so impressed with Dr. White.

When we left, Ryan got some cool kid-sized dilation sunglasses (well film, really) and I put them on him. He felt pretty studly. Instead of taking him directly to school, as was the plan, we had to go across town, back to my house for us BOTH to shower and change clothes. I've never felt better in my life!!!! Clean, dry clothes do a world of good when you've been in stinky, wet clothes for 1+ hours! Same goes for Ryan! ;)

Stud with his shades

"What's up, ladies?"

1 comment:

  1. Holy cow you are the best momma, ever! What a tough time for both of y’all, and you survived! Love y’all!

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