Today was the appointment with Dr. C to discuss (again) the issues Braska has had for almost two years now. The head tilt and tip. For lack of a better description. I wish I had time to find pictures, but if you’ve been around long, you’ve noticed that she looks down her nose at everything, literally. (I just peeked at her blog and saw that the picture posted earlier today of her at the Eye Center’s front desk shows the tip and tilt, both. If you look, she’s looking into the desk area, but her head is aimed as if she’s looking up at the ceiling. Her eyelids look closed because she’s always looking out of a little space right above her cheek. The pictures of her scraped up face and head from last week show it as well. Rarely do we get a look with open eyes straight ahead through the glasses.) She tips her head way back and almost faces the ceiling to see something straight in front of her. She also tilts her head to the right shoulder as well. In the last year, we’ve noticed that even WITH her glasses, her left eye is crossing inward quite a bit. This is supposed to be managed with the prescription on the glasses, but it seems to have become worse.
It’s been one of those things that drives me nuts, but that I always feel bad getting frustrated about since it feels like it’s just because I’m vain about the zillions of pictures that I take with her nose in the air.
The reason why she does this is that she has nystagmus, or “wiggly eyes.” This is just one of a few diagnoses that she has related to her eyes. It’s been present from birth, though we noticed it more at around 4-6 months and then progressing more in the last couple years. It’s gotten really severe, in that she often is tilting or tipping at 45 degrees, which is pretty significant when it comes to the problems it could create with posture and other issues. The tilting or tipping is to find her “null point,” the place where the eyes do a minimal amount of moving. She is adapting by positioning her head because she is unable to control them as she wants to when she is looking at things straight on.
So today, after “stumping” our ophthalmology team for a while, or at least presenting in confusing ways during the last several exams, they were able to pinpoint that she has what is called Manifest-Latent Nystagmus. This is good news because at least now we know where to look for our next step. It’s not AS good, because the next step is most likely surgery.
Granted, we’ve been through more than a few surgeries, open-heart being the most significant, and we’re not really afraid of procedures in general. BUT for some reason, this one has had me more hesitant than the others. Even the heart. Because it’s her EYES. I have real trouble considering the results of something going wrong with her eyes. The heart HAD to be fixed for her to live, and somehow, that wasn’t so scary. It was the only option. In this case, it does appear that it NEEDS to be done, also, but I still wish they weren’t going to mess with her eyes.
Dr. C, though she is VERY experienced and a lead of the eye center at Children’s, has not done the Modified Kestenbaum procedure that is required to help correct Braska’s issue. But another doc in the group has done some and we’ll be seeing him on Monday morning. Dr. L will be the newest member of our specialist team. Dr. C also feels that the crossing that we see a lot in the left eye is also a result of the MLN issue and not actually true strabismus/esotropia. I’ve read a lot about this today, and there seems to be a lot of evidence to back her up. That’s why she has letters after her name and I don’t!
It was explained to me that the adjustments to the eye muscles will be somewhat rotational instead of the typical horizontal or vertical. So her particular issue and the needed repair are definitely more rare than most similar issues.
Yay. Because we can’t do anything normal around here!!
Dr. C did confirm with me that this is NOT a DS thing. This is a nystagmus thing, and many kids have nystagmus without having DS. It is not uncommon IN kids with DS, but what she’s dealing with now is not one of “those things” that just comes with having DS.
Chalk it up. Her feeding issues are not DS (FAR beyond the “norm”), as well as a few other fun things that are part of life around here. And now we add this new diagnosis…manifest-latent nystagmus. No big deal, just something to learn about, address with the proper treatments, and continue to move on.
I’ll know more about timing for the repair after Monday’s appointment. We appreciate your prayers for our girl and for our team of great doctors. I’m very thankful that we have ready access to such a great facility and group of physicians.