Good Eye Exam

Whitney had surgery to correct a vision problem called Strabismus approximately two years ago.  The surgery actually adjusted some of the muscles attached to her eye in order to help them straighten out.  It was a success and Whit's eyes have tracked together properly ever since.  

We've been seeing her ophthalmologist every six months to ensure things keep heading the right direction.  The most recent visit was this past Monday.  Melanie took Whit into the room and Whitney began pointing at her ears.  This was her way of asking, "are we at the ear doctor's again, Mom?"  She has her ears checked a lot more often.  Melanie explained that, "no today we're having your eyes checked."

I don't think Whitney really understood that part, but she did cooperate as the doctor and his assistants showed her pictures and asked what they were.  Whitney identified most of the pictures and Melanie interpreted her signs for the office staff.  That game was a lot more fun than having someone look into her ears.

Finally, to get an accurate understanding of how well Whitney sees, the ophthalmologist had to dilate her eyes.  Whitney tolerated it pretty well and the result was terrific.  Turns out, based on the exam, that she has 20-20 vision and doesn't even need glasses!  That's more then I can say about either of Whitney's parents.  Both Mel and I need correction so it's great to know there's something about Whitney's health that, for now at least, going working perfectly.  Things went so well, in fact, that the ophthalmologist is going to let us go a full year before we need to go back. 

Whitney kind of struggled through the rest of the afternoon while her vision was blurry and her eyes were sensitive to light.  She wouldn't tolerate the sunglasses they gave her at the office, so she spent the ride home from with her eyes squinted.  Later in the evening she allowed us to put her little sunglasses on her to go for a walk.  And by bed time she was back to normal again.

Eye Muscle Surgery Follow-up

My wife and I have been pleased with our daughter's vision since her eye muscle surgery back in September. Our daughter's eyes are much straighter and they do seem to track together. The healing process was kind of long. She had swollen, bloodshot eyes for quite a few weeks.

At a follow-up appointment our pediatric opthalmologist said that our little one's vision was good but that the surgery actually overcorrected her eyes' alignment a little bit. This isn't a severe issue, but it does mean going back to eye patches again. She'll wear a patch over her left eye for a couple hours each day for eight weeks to allow her brain to bring her right eye back in just a bit.

We've been working with the patch for a few weeks now and things are starting to look more like they should. I'm really hoping this will be the end of my daughter's eye struggles. Her vision is so important. I want to make sure that sees well. If there's one thing I've learned from raising a disabled child it's that you never take your health and abilities for granted! There are just too many things that can go wrong. If you feel healthy and strong be grateful and enjoy it! It's a huge blessing.

Eye Muscle Surgery

I reported a couple months back that my daughter's opthalmologist had recommended some surgery to adjust the muscles behind her eye by a few millimeters in the hopes that she would start seeing with binocular vision again. She'd been using her eyes independently since they started crossing early this year. We also scheduled the ENT to put in some new tubes to help her ears drain during the same procedure.

So last week it was surgery time. We had to report to Primary Children's Hospital at six in the morning because my little girl was the first kiddo on the operating table that morning. We got her all dolled up in her ICU gown and into the operating room. She went to the anesthesiologist without so much as a reservation my wife and I headed for the waiting room.

After just ten minutes the ENT came in and said he had placed new tubes in her ears and that everything had gone smoothly. Then the wait was on. The eye muscle surgery took an hour. So after waiting around the opthalmologist came by to report on how things went. He said the operation was a success and that everything had gone according to plan.

Her eyes had stitches the width of hairs holding the muscles in their new locations. The doctor said she'd feel like there was sand in her eyes for the first couple of days after the surgery. Then the delicate stitches would start to dissolve and things would start to heal. She had a few bloody tears that first day and her eyes are still very bloodshot. But she's healing well.

The opthalmologist made just a few millimeters change to both eyes but the difference is amazing. It's been a little less than a week and her eyes are working together again! My daughter will get a full eye exam again at the follow up appointment in a couple weeks, but so far things are looking good. Thank goodness, once again, for great medical care. Thanks to the great healthcare pros at Primary Children's my daughter is seeing clearly again!

Vision Follow-Up

Yesterday, it was back to the opthamologist for my little girl. We determined at her first visit that she was using her left eye almost exclusively and her right eye had begun to drift in a state eye doctors call strabismus. The opthamologist prescribed some eye patches that my little one had to wear over her good eye for four hours each day.

The changes were dramatic. Her lazy eye perked up and started tracking much better. At yesterdays' appointment, the doctor said she is now using both eyes again. The issue now is that she is using them independently. She doesn't have the binocular vision she had before this all started.

That means surgery. In order to get my daughter's brain using both eyes in tandem again, we'll be taking her in for a minor eye surgery where the doctor will move the muscles in her eye a few millimeters in order to adjust their alignment. The hope is that this adjustment will jog her brain into using them normally again. The procedure has about an 80% chance of success since she had normal vision for about two years before developing problems. He said if she had only had normal vision for six or nine months the prognosis wouldn't have been as good.

My concern is that a very high percentage of 1p36 deletion kids, whose pictures I've seen, seem to have an eye alignment problem. Could it be that their brains have difficulty with binocular vision? It's hard to say because the brain cells that control the eyes haven't really even been mapped out yet.

I'm just grateful that my little one just needs a minor out patient tune up instead of some major open heart surgery. Hopefully she'll be seeing in stereo again soon!

Stress About Strabismus

I had mentioned a while back that my daughter has one of her eyes that wasn't tracking as well as the other and that it had become a concern. So yesterday my wife took our little one to the ophthalmologist. It was a long visit but we learned some very important things.

My daughter's vision is actually near 20-20 but she has a condition known as a strabismus. That's where the eyes are misaligned in relation to each other. It can cause double vision and what's worse is that the brain can start to shut down one eye in order to compensate for the double vision. This is a condition that occurs to varying degrees in about 5% of all children and in a much higher percentage of 1p36 deletion children. There are many variations and causes of strabismus. For an excellent resource on the condition see http://www.strabismus.org/.

The ophthalmologist suggested that we try covering my daughter's dominant eye with an adhesive patch for four hours each day to force her brain to pay attention to the eye that has stopped tracking as well. Today was her first day with the patch and I can report that it was a less than pleasant experience for all involved. I can't blame the little girl though. I wouldn't want my dominant eye blocked out by some sticky band-aid thing for four hours either.

The most difficult thing is that the eye doctor didn't offer much promise that the patches would help. He's going to let us try it for six weeks and then he'll look at her again. The reason for the rush is that time is of the essence in correcting this disorder. It can be resolved surgically by going in and tightening up the muscles around the eye, but the longer we wait the lower the chance of success. So we already have contact info for a surgeon at the Moran Eye Center and we're standing by. The procedure is just out patient, but it's still a concern. I guess when it comes right down to it though, if it helps my daughter see, we'll do it.

She can't speak and she can't hear real well so we can't risk limiting her vision too.

Eyesight

Current information about 1p36 Deletion Syndrome indicates that my daughter my have trouble with her eyesight. So around 18 months we took her for her first eye exam. The doctor told us that her eyes appeared perfectly healthy and that her vision was normal for an 18 month old. My wife and I were glad to hear that good news and hadn't given vision much more thought.
Until about a month ago. I've begun to notice that my daughter's eyes don't seem to point the same direction when she looks at me. It comes off as looking vaguely cross-eyed. My wife, ever the observant one, noticed this first, and thought to ask the physical therapist about it. The therapist was interested and asked if the cross-eyedness gets better or worse when my daughter's well rested or tired. So I've been watching to see if there's a difference. I really can't tell if there is or not.

So I guess it's back to the eye doctor. We've already set up the appointment. But I wonder if this is some sort of lazy eye thing or if there are deeper neurological issues lurking beneath this symptom. So have other 1p36 parents seen this? The pictures of kids I've seen in medical books do seem to have a mild cross-eyed look to them. Maybe this is the result of my daughter's eyes being placed so close together? As usual, I have more questions than answers, but as soon as I get some answers, I'll post them here.