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!

Halfway There

This morning, Solly and I logged our 20th Hyperbaric Therapy Dive. We are now officially at the halfway point of this therapy treatment! Since I first wrote about this alternative therapy, Sol has made the following gains:

Hello, we are 2 years old

Overall, we are noticing that Solly is acting very much like a two year-old. For anyone who has previously met Sol, you know that he was a very quiet little boy who enjoyed quietly chewing on a toy and might give a shy smile.

Now Sol is quiet no more.

Anywhere we take him, Sol likes to be the one making the most noise. Walking through a grocery store, sitting at a restaurant, eating outside, or playing in the pool, this kid is now LOUD. And more than that, he is finding his range of emotions. One section he’s happy, excited, wild, and then the next he’s sticking his lip out with a tear forming in the corner of his eye. There’s no telling what version of Solly you will have at any point of the day. Because this is so much closer to a typical two-year-old than we’ve previously seen, we love it!

Making some noise while out to eat

What’s that you say?

Nope, we don’t have words yet, but, oh man, are we close. Almost immediately after we began hyperbaric oxygen therapy, we started hearing Sol say and make new noises, playing with the way he holds his mouth and moves his tongue. He is saying “hi” all the time and waving. Sometimes we think we hear him say certain phrases that we say to him all the time, like “how you doin'” or “all done”, but we haven’t gotten him to repeat them (yet).

Not only has Solly’s expressive speech made some gains, but he is also becoming more aware of and interacts with his environment. Prior to our travels for HBOT, Sol learned how to clap, but would only do it if we told him to. One day in the hyperbaric chamber, we were watching A Bug’s Life and as an audience of ants cheered, Solly started clapping. He also loves chatting with Bea and mimics the noises she makes.

Loosey Goosey

Right before we started the HBOT treatments, we began weaning Sol off of baclofen, which is a prescription muscle relaxer primarily prescribed to patients with Multiple Sclerosis. We decided to take him off the drug because we didn’t like the side effects, it didn’t really seem to be working well, and we’d found out that not only was it not FDA-approved for children under the age of 12, but studies have shown little efficacy in people who have had a stroke.

I was afraid that this would make him tight, but it seems as though HBOT has loosened up most of Solly’s tight muscles while helping his core stay strong. With the exception of tight hips, the rest of Sol’s body is nice and loose not only in the chamber, but at home, too.

Working on that balance

Bouncy, bouncy, bouncy

Sol’s new favorite activity is pulling himself into a low kneel after he’s been in a quadruped position, and then trying to bounce himself forward. Check it out:


While most of these gains have been amazing, we have taken a step backwards in another area. Unfortunately, over the past two weeks, we’ve also been battling some of Solly’s recurring eating issues where he refuses to eat. While many say that this is typical for a two year old, it is extremely scary for us since Solly is already quite skinny for his height and has trouble keeping weight on. Since we have had these issues in the past, we don’t think they are related to HBOT, so we’ll keep moving forward and hope that Sol finds his appetite soon.