Third EUA

Alex had his third EUA on Friday.  We had a 6am arrival time at Duke.  We were in a different bay than the last two times and Alex remembered that the other one had bees on the walls.  He did well with the nurse taking his vitals -especially since Daddy made it a game.  Alex did not want the oral medicine to help him relax before going back for general anesthesia.  After a lot of coaxing to try and take it with apple juice, the nurse just had to put it in his mouth.  It tasted terrible and he gagged and spit up a little, but did keep the majority of it down.  In the last two pictures you can see the medicine was working and he was getting really silly.  Recovery went well and was similar to his first EUA about a year ago.  For his second one, they did not include a drug in his IV at the end to slow his wake up and he woke up very disoriented.  This time, similar to the first one, they included the drug and he was in recovery for a while.  He woke up and wanted everything removed (IV, etc.).  He calmed down after a while and fell back asleep on my lap.

Results:  No changes.  Pressures  still low (no glaucoma), clear corneas (no cataracts), no progression of the lacy membrane that covers the drain.  Next appointment will be a clinic visit in 3 to 4 months.  Most likely will have surgery after that to correct his left eye that drifts out. 

 

January 2013 Ped Op Visit

Today Alex visited his Ped Op at Duke.  It was a standard visit to check how he is doing.   

We were unable to get a reading of his eye pressures because Alex did not like the instrument in his eyes and wanted to touch it or turn his head away.  Basically, he is a squirmy toddler and has figured out the whole doctor thing.  It is challenging because if they cry, the pressures rise.  Not that she even got a reading.  He just didn't want to cooperate.  His pressures were good and low in September so we are going to try again in May to get a reading.  If we cannot get a reading at that appointment, we will discuss an exam when he is sedated. 

To check his vision, drops were applied to dilate his eyes.   The doctor held up different glass lenses to check his vision.  Alex is extremely far sighted which she had mentioned at previous visits without the vision test.  Today the doctor prescribed glasses.  We are going to see if he is interested in wearing them to improve how he sees things close up.  We are hoping he notices the difference and wants to wear them.  This process was difficult because he did not want to let the doctor examine him (that whole toddler thing) so we had to hold him snugly and hold his eyes open so she could look.  Poor little guy.......lots of crying and tears......very sad for everyone in the room.

I was a little concerned with the length of time per week Alex wears a patch on his right eye.  But the doctor said he has improved and we will continue the patch therapy for 5 hours per week.

Wednesday is Art Cart day at the Ped Op office so Alex created art with the very nice lady who leads it.  He made dot marker art and played with pom poms in a plastic egg taking them out and putting them back in over and over.  It is nice they try to provide activities/toys/books/etc. for the children since the appointments last a minimum of two hours.

Next visit is in May so we will keep you updated.   I need to price glasses and I will make sure to post about that process.  Here is a picture of our little cutie before we left for the appointment.  

Alex - 17 months old

September 2012 Ped Op Visit



September Ped Op Visit Day





Alex visited the Ped Op at Duke at the end of September.  It was a different experience to take a squirmy toddler instead of a baby. Having his pressures checked was the hardest part because he wanted to grab the equipment or twist his head away.  He had a great visit - no glaucoma, no cataracts, no glasses.  He is using his right eye more than his left and the left is drifting out a bit.  This is called strabismus which is a muscle imbalance of the eye which leads to crossing of the eyes or a “lazy eye.” In esotropia, the eye turns inward. In exotropia, the eye turns outward, which is what Alex is experiencing.  I hadn't noticed it because of the nystagmus (wobbly eyes), but after the doctors pointed it out, I see it.

The Vision for Tomorrow Foundation has a great summary of aniridia's impact on vision.  For strabismus they note the following:

Impact on vision:  If uncorrected, strabismus can lead to amblyopia, or the loss of some vision function in the weaker eye.

Current medical/surgical treatments:  Strabismus is correctable with glasses, eye-patches and/or surgery.

For Alex, the current treatment is patch therapy where he wears an adhesive patch on his right eye for a total of 5 hours per week.  His next visit is in four months and we will see if there has been an improvement with the left eye.

We call it "patch time", but lately I try not to say "patch" because he is a smarty pants 1 year old and knows what the word means and tries to take off the patch.  The very first day he seemed scared after we put on the patch and cried quite a bit.  You can see the sniffles below.



First patch day - Mr. Grumpy

Even that first day he was easily distracted after a few minutes by playing with toys, books, and cruising around the room.  We try to give him toys that he really likes. 



Patch time is a family affair

The first few days were difficult, but he doesn't seem to mind the patch unless he is really tired.   He's worn it during meals, on walks, or out at a store.  The hardest part is getting the patch on.  I sneak up behind him and try to put it on as quickly as I can.  We are hoping the patch therapy works and we can avoid surgery.