When you look back and realize small signs of Lyme that were there all along - eye issues & careful listening as parents
As with many Lyme families whose kids are able to attend school, even if part-time, holiday breaks are often fun mixed with various medical appointments. I try to schedule them over breaks if possible because so much school is missed and so much school work has to be made up.
One particular appointment this break got me to thinking about how there was a sign for many years before our son was diagnosed that indicated something was wrong and it happened before many of the other more obvious signs appeared. Off and on for years he had been asking for glasses and complaining that something was wrong with his eyes.
Around fifth grade at his request, I took him to one optometrist who pulled me aside and said he was faking it after the exam - his eyesight was just fine. Given that his friend had just got his first pair of glasses, I chalked it up to a desire to follow his friend's footsteps.
Complaints continued off and on yet further optometry appointments revealed his eye sight was fine. At one point at his request, we did buy some reading glasses for him which he said helped some. Finally last spring he was unable to read text at all and his eyes hurt terribly. Never one to complain about physical pain, it was unbearable to him by the time he spoke up.
We literally left his LLMD appointment late one day and he demanded that we drive straight to the optometrist, who finally said that he was now near-sighted - very common for teens his age. He received a prescription which we filled then and there. It was a huge relief to him and he seemed to be able to read again, probably because the frames were drawing his focus in.
Then this fall, he began complaining again about reading again and had already long ago changed his phone text to a larger size. It was after I handed him something to read because I didn't have my reading glasses and he couldn't that I realized it was time for another eye exam.
Between the brain fog and the eyes, he had long given up reading anything of length this past year. We are slowly trying to work on that but a full day of school and whatever reading is required there is truly all that can be expected - and that - changing expectations - is fodder for another blog post!
By this time I had read online that a baseline exam with an opthalmologist to see if there was any neurological involvement due to Lyme and tick diseases was a good idea. There were also a few articles appearing on my Lyme news threads about the growing realization that eye involvement was an issue for many Lyme patients.
Thus, I scheduled an appointment with a Lyme literate pediatric opthalmologist and it was discovered that his distance vision was now much stronger in one eye, so he was prescribed a weaker lens for that. I've never heard of a kid moving down so drastically but with Lyme, anything is possible. He also switched to bifocals which hopefully will aid him in reading since that was actually his biggest frustration and concern.
So, as parents we do need to regularly question our kids in a gentle way about all their body systems. I did this every couple of days early in treatment because there are so many symptoms flaring and coming and going. Now a year in, we discuss it once a week at most, but as his eye situation showed me, even with recalcitrant teens, we must encourage them to stop and reflect on how their body is or isn't working properly throughout the healing process.
This is particularly challenging with the youngest patients though and I feel for those with children who aren't able to articulate what is going on. I know our son couldn't in the early years. Also they don't often know what "normal" is since they may not have experienced it. Thus careful and thoughtful questioning and listening as a parent is critical.
Working wife and mom to two, including a teen son who was diagnosed with Lyme and other co-infections from an unseen tick bite with no bulls-eye.
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