We’re adding a new specialist to my son’s care team

A columnist grows concerned about her son's recent eye issues

Keara Engle avatar

by Keara Engle |

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Last week, my 5-year-old son, Cayden, had his annual well-child check with his pediatrician. He wasn’t due for any vaccines, and for the most part, the visit was fairly uneventful.

We try to see the same doctor for these appointments, as she’s familiar with Cayden and all of his special needs related to infantile-onset Pompe disease. It brings me comfort that she stays up to date on his health and reviews the notes from his appointments with specialists to ensure everything is going well. She’s also the one who’s gotten our insurance company to supply us with diapers since Cayden was 3.

There weren’t many concerns at this visit, but one has me feeling a bit nervous. During his vision test and eye exam, the doctor noticed that Cayden’s pupils are two different sizes. She asked if any of his other doctors had noted this, and I informed her that they hadn’t.

Cayden sees a multitude of specialists throughout the year, and they always look at his eyes during his physical examination. This leads me to believe that his eye issues are a sudden change. The dilation isn’t something I’d noticed because Cayden has very dark brown eyes, so his pupils aren’t really visible unless you’re shining a light into his eyes or looking at them up close.

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After a clinic visit, my son will be seeing an orthopedist again

There are several possible causes of a difference in pupil sizes. The doctor mentioned that it could be neurological or caused by an injury, or this could just be normal for him. Cayden hasn’t been physically injured, but the eye with the bigger pupil has been irritated for a few days now. I thought perhaps the BiPAP mask he sleeps with was leaking air into his eye. However, that’s happened before and it didn’t cause a change in his pupil sizes.

Due to the concerns, Cayden’s doctor referred us to an ophthalmologist. My son has never needed to see an eye specialist before.

The doctor told me that I should hear from the specialist within two weeks, and that their office can typically get patients in quickly. We’ve never been to this facility before, but I trust the doctor. I’d rather get Cayden in quickly at an unfamiliar location than have to wait weeks or even months to be seen at the children’s hospital where most of his other specialists are located.

I’m a bit nervous about the appointment. I always tend to think the worst, but hopefully it’s just an irritated eye or something along those lines. Thankfully, Cayden has been behaving normally and doesn’t seem bothered by his eye issues. I will try my absolute best to remain positive until the appointment, even if I’m a bit anxious until then.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


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