On Vision and HBOT

For those of you who have been following our blog since the beginning, you might remember my constant worry over Solly’s vision. Sol was born with his eyes somewhat stuck looking towards the left. A part of the initial prognosis given was that he could be blind. (Note to Mom’s new to a pediatric stroke diagnosis: take the first prognosis, however grim it may be, and consider it only a possible outcome. Your child CAN and most likely WILL do much more than doctors believe he or she will after a stroke.) Even after rigorous vision therapy, we still got diagnoses – from several different doctors, many giving conflicting thoughts – of delayed visual maturation, CVI (cortical vision impairment), strabismus, nystagmus, possible visual field cut, possible double vision, and so on. With all these possible diagnoses swirling around us, even though it seemed that Solly was compensating well for whatever vision issues he had, we couldn’t be sure how well he was seeing. It was always a point of major frustration.

With hyperbaric oxygen therapy (HBOT), we had read of many children having improved vision after a full course of treatment. In our own experience, we saw many instances where Solly was interacting with his surrounding environment in ways we’ve never seen before, thinking that maybe it helped his vision and helped his brain make new connections as a result. But whenever we think Solly is interacting in new ways, we question IF he is and WHAT, if anything, helped his brain make those connections. We try so many things that we can’t always be sure what move was the right one.

However, after an appointment with Sol’s developmental optometrist earlier this week, we are no longer questioning these new connections: HBOT did, in fact, help Solly’s vision.

Amusing ourselves at an early morning optometry appointment

This past October, at our last appointment with our optometrist, he ran a test on Sol where he set up sensors on his head and had Solly watch a series of images flash on a screen. The sensors provided data into what Solly was seeing and how well his brain was processing the images. We were delighted when the results came back as “within normal limits.”

This week, we saw the same doctor for the first time since October and he ran the same test. After he examined Solly’s eyes, he told me that his vision had improved even more in the past 8 months. He asked if we’d been working hard on our home vision therapy exercises. I said, no, we simply just try to expose Solly to as many new environments as we can, but that we’d also done a full treatment of HBOT and thought that had a great impact on his vision. His optometrist not only agreed that HBOT had helped but he also encouraged us to do another round of treatment as our schedules allowed. We will continue to be followed by Solly’s optometrist every 6 months, but right now, no need to worry about glasses, patching, or surgery at this point. 

We’ll count this news as one big win for HBOT!

I Spy

I spy with my little eye someone who loves to smile!


And speaking of eyes, we finally have a firm grasp on what’s going on with Sol’s eyes. Over the past few months, I felt like we were getting hunches and ideas from specialists, but no concrete diagnosis.  Two weeks ago, I decided to listen to my intuition and took Sol to see a pediatric neuro-ophthalmologist (how’s that for a mouthful?) to see what’s what.

Boy, am I glad I did.

This appointment took us to Children’s National for a second time, and like our appointment there with the cardiologist, I was so happy and at ease with this doctor’s attitude and outlook for Solly. As soon as he walked into the room, he said, “Before I begin, I want you to know that there are many parents who’ve sat in that chair, with a diagnosis like your son’s. I probably will see at least one other parent like you today. Stroke in children is very common.” Many doctors look at Sol like he has three heads, so this comment set the tone for a really great appointment.

The doctor then examined Sol’s vision, having him look at and follow a white card with black shapes on it, as well as a series of lights. He got right up to Sol’s face (who giggled when the doctor spoke to him), and picked him up, spinning him around in a chair to watch how his eyes moved. He looked into Sol’s eyes to check out his optic nerves. Then, because I didn’t have a copy of Sol’s MRIs, he read through the radiologists’ notes.

As a result, his findings were:

– Sol can see. There’s no doubt about it.

– Based on his medical history (his “rocky perinatal period”) and the fact that his vision is continually improving, he diagnosed him with delayed visual maturation (DVM). From what I’ve read about DVM, it presents very much like Cortical Vision Impairment, but self-improves within the first year.

– He has an obvious left-sided preference, but can move his eyes to the right. The left-sided preference is likely due to one of the areas in his brain that was impacted by the stroke. It’s possible that he could have visual field deficits – in other words, a loss of the peripheral vision on the right side.

– His eyes will likely move towards midline and the right side on their own. We will continue to work on this skill in vision therapy.

In the weeks following this appointment, we are continuing to see improvements in Sol’s vision. He is looking at us, his therapists, the dogs, and toys, and watching movement very consistently. The biggest development came today during our Physical Therapy appointment: Sol turned his head, looked at a toy that his therapist was presenting to him, and he reached out for it with his left hand. Multiple times.

It sounds like the littlest thing, but this was a huge first for Solly – particularly huge considering nearly 6 months ago, a fellow in the NICU told us that Sol could be blind as a result of his stroke. Our little man is continuing to show strength, will, and stubbornness, and we couldn’t be happier!

Hello, giraffe

Hello, giraffe

I think I will eat you!

I think I will eat you!