Tuesday, April 19, 2011

Eyes can be scary

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.


  1. Lots of thoughts and prayers for B!!!

  2. RK - I see you everywhere online & you're on my reader but I haven't "introduced" myself because I haven't read all your archives & always think that's kind of odd, to jump in like that. I realized bit ago we're in the same area (you were the Pujol's brunch, yes?) - my daughter JUST had eye surgery last week, at Children's no less. Our eye doc see a lot of SN kids - though my girl had strabismus correction (again), so slightly diff deal. They may be even part of same practice, who knows? Anyway,I had the exact same feelings about the eye surgery (it's elective! GAH!) since we had AVSD repair too - drop me a line if you want the longer version.

  3. RK - so thankful I took time to read some blogs tonight...we just had an appointment with our eye dr...Addie has the same thing, head tilt, nose in the air nystagmus, finding the null point...and when they put glasses on Addie to correct her vision (near sighted in one eye, and far sighted in the other) her right eye, which has been turning in more frequently, got worse and turned in quite often...so our dr. is doing some research, but I'm thinking I'm sending her some info on this diagnosis as it seems to be very familiar...do you have any other sources or websites you have found useful?
    Thank you so much!!!! Good to catch up with you guys!

  4. Just checking in. Looks like we went to the eye appointment on the same day. Yes eyes are scary. I so can understand this post about choosing surgery for eyes. While at the office and Wysdom was crying the doc asked if I wanted surgery. I paused for a minute or so to think about it. Yes it is a choice.

    Sounds like you are close to surgery. Wysdom has Nystagmus but I don't notice it that much. Strabismus is a bigger issue for us right now.

    Thanks for sharing as I can so relate and had a rough day with the eye appointment. Sounds like you are at a good hospital to do it.

  5. Hi RK, I can understand you being scary for the Eye surgery. Just to think about it is scary. I will be praying for Braska and you guys.

  6. Wow. It IS nice o have answers and options, but I definitely feel you on the difficult decisions. Thinking about you all!

  7. You all will be in my prayers. Love ya.

  8. Man alive. I'll be prayin for ya all, hope you feel more at ease after you talk to the doc on Monday. Glad you are starting to get some answers!

  9. Sending thoughts and prayers! Keep us posted!

  10. It looks like the procedure has a high success rate, but I've had the same thoughts about surgery. I don't know if it will be an option for Goldie. We still can't get in to see her ophthalmologist. (he moved to another state)

    We took her to a developmental optometrist and he prescribed prism lenses for her. When she wears them they do help her head tilt. For the first time she was able to watch tv without her head tipped way back.

    Thanks for the update. I learned some new things About nystagnus!


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