The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Wednesday, October 13, 2010

31 for 21: More about eyes [ Down syndrome, glasses, eyes, nystagmus]

If you missed the previous blip about Braska’s eye appointment, you can start here.  This is gonna  be a long one, but if you’re have an interest in tots and odd vision issues, this might be, well…interesting.

As I mentioned as a teaser the other day, I had a couple of concerns that caused me to make the appointment we had on Monday.  One was the tilting chin-up habit that Braska’s been perfecting for over a year now.  Though it has become more persistent and more extreme in the past few months.  The other issue is that she has been unable to sit on the couch and remain engaged in her shows.  She has been requiring to be closer to the TV than ever before in order to stay tuned in.

She has her yearly ophthalmologist appointment with Dr. C coming up in early December, but I decided these things needed addressing sooner than that.  Plus I wanted to make sure that if we needed new glasses, we could get that done with what was left of our flex spending account.

So off we went…  Dr. S (optometrist in Dr. C’s office) asked how we were and what was new, and I launched into my info-sharing mode, without overwhelming or sounding fatalistic. A delicate balance, but an important one, as I learned in years of hearing doctors express frustration about the way people present issues back when I was managing practices.  I explained how she looks down her nose at everything that required detailed attention.  I reminded him that we had addressed this previously with Dr. C and she didn’t feel it was visual, but instead thought it might be a strength issue and recommended we talk to PT about it. 

After last year’s appointment, we DID investigate, via a variety of other modalities, the cause of this habit of hers.  We talked to the PT, and it was determined after evaluation that this was not purely a core strength issue, but that since Braska does, in fact, have a VERY weak core, we would focus on trying to increase work on that area in order to help her posture and ability to hold her head properly.  We also talked to OT who also made adjustments to their exercises and activities to include more things that caused her to focus in various places and at different distances, hoping to help with her visual motor as well.

So neither PT or OT found the issues to be directly in their wheelhouse, so to speak, but they both agreed to assist toward the goal.

I have felt from the beginning that this was more visually related, as in Braska’s vision—her ability to see, not just visual motor.  She has nystagmus, which is not uncommon, and looks like her eyes are wiggling back and forth when she’s focusing.  This wiggling is much more easily controlled when she is looking down.

For those of you around from WAY back in the day, Braska was totally enamored with her hands for quite some time around 3 to 5 months of age. She was evaluated by a visual therapy specialist and it was found that she was finding her “null point,” or the place where she could make the nystagmus stop and see most clearly.  She generally held her hands down by her chest and peered at them for long moments at a time.

What I found when I did my own unprofessional testing recently is that Braska’s nystagmus is once again still when she’s looking down her nose with her chin tipped up high to watch something.  When we hold her head in a proper posture position so that she’s looking straight forward at the intended target, her nystagmus is quite obvious and she doesn’t stay focused on the target for long without looking around and then returning to the target.

The other element of this head-tipping situation is that when I held her in the proper position, encouraging her to look straight at the target, she had to raise her eyebrows to get her eyes to open enough to see straight ahead.  Like she didn’t have the strength to open her eyes all the way.  She CAN open her eyes, don’t misunderstand.  But in order to watch one of her videos or follow along with a book for several minutes, she cannot hold her eyes open in that position without looking away, resting by looking down, and then trying again. 

These findings brought our OT/feeding therapist to encourage us to have her evaluated by an OT who has specific experience with vestibular and visual motor.  We did have this evaluation done, and the OT was great.  She found what we’d suspected, that Braska’s low tone (hypotonia, common in DS) is causing her to struggle to work her muscles around her eyes and in her face to USE her eyes as she should.  Crazy stuff, I think.  This OT recommended specific vestibular therapy and strength exercises focused on the muscles used around her eyes.  Unfortunately, our insurance wouldn’t cover these things at that location, so we have to start over again somewhere else and hope we get someone who knows about this sliver of the OT element.

I could go on for days, and it might seem I have, but I’ll sum this part up like this…  things that don’t seem right often aren’t.  I was convinced that this was not just a quirky behavior or low-tone slouching issue.  And as it progressed, I insisted it be investigated.  I’m very glad I did.  Though we’ve still got some ground to cover to make headway, I’m pleased that professionals are seeing the problem, addressing the underlying issues, and are willing to help us find a plan that will benefit Braska.  That’s the primary goal, of course.

Dr. S was very open, understood where we’ve been with this, asked great questions and took lots of notes.  He will be reviewing the info with Dr. C and when we see her, and probably him also, in December, we’ll be going with photos and video in hand of Braska in action with the tilting issue, per his request. She did “perform” well for Dr. S on Monday, as he put in a video on the TV in the room and she did just as she usually does.  He played with her position a bit—it was Elmo so she didn’t mind—and he tried to hold her head up, manipulate her position, etc.  He was able to get a great example of how she lifts her brows, how she cannot stay focused on the show when forced to watch straight on, and how her nystagmus changes with her position.

All this info will be compiled and we’ll come up with a plan soon. 

Seemingly uninteresting in the situation was my second concern, that she has to sit so much closer than she used to when watching something.  He also did some super special scientific testing on this while she was watching Elmo, rolling her forward in the stroller to see where she engaged.  And after dilating her eyes and seeing that her prescription has changed quite a bit, that fit as well. 

So we have answers, or at least the right start toward finding the answers.  That’s good.  I felt great about how the appointment went, and I let him know that.

Now we wait for the new lenses to be done.  We evaluate how the updated prescription helps, and we return with new date in December for consultation with Dr C on the situation.  I’d like to avoid another surgery, but it’s always a possibility.  We’ll hope that we can come up with a non-invasive approach that works.

If you have any questions about this, don’t hesitate to ask…  eyes are something we’ve had experience with.  She’s had her glasses for almost 3 years! Wow!

No comments: