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!

6 months!

Hey Dad, I'm 6 months old!

Hey Dad, I’m 6 months old!

I had trouble getting started with and completing this post. Today is Sol’s 6 month birthday. Part of me is so excited that he’s been with us now for half a year and continues to improve and recover really well from his stroke. The other part of me hates the monthly milestones because they force me to realize how far behind Sol is from a “typically” developing child. In reality, he’s only a month or so behind, but it’s very hard for me to be ok with the delays, particularly since we don’t know how he will end up recovering. (I’m sorry for the brutal honesty and not-as-positive tone here – it’s just part of this roller coaster ride we call recovery.)

Here’s a quick update on where we are:

Medical

Just a cool dude in a fish hat

Just a cool dude in a fish hat

As you may recall, in addition to our pediatrician, we see a hematologist, a neurologist, an ophthalmologist, and a neonatalogist as a follow up from our NICU stay. We’ve found out from our most recent visit to the hematologist that Sol is not at risk for blot clotting, so another stroke is very unlikely. Whew. Our neurologist has decided that, since Sol has not had any seizures since he was in the NICU, that he can gradually outgrow his anti-seizure medication (Keppra) dose over the next 6 months, with the ultimate goal of being removed from the drug altogether when he’s a year old. She was concerned over his slow head growth and noted that while it’s likely due to extensive brain damage as a result of the stroke, we may want to do xrays of his head just to make sure his sutures have not prematurely closed and are hindering brain growth. I plan on chatting with our pediatrician next week to make sure this is necessary before moving forward. My goal is to help Sol progress as much and as quickly as possible, but I definitely don’t want to put him through any additional testing or procedures unless it absolutely has to happen.

This month we also saw a neuro-ophthalmologist who gave us a great diagnosis on Sol’s vision. Solly keeps looking around more and more each day, and is really improving his hand-eye coordination on the left side.

Therapy 

Our therapy plan is as follows: PT twice a week, OT twice a month, and Vision Therapy twice a month. In PT and OT, we are continuing to focus on getting Sol to use and strengthen his core muscles and right arm so he can learn to sit up and get ready to crawl. He can now hold a

Rattles are delicious

Rattles are delicious

supported seated position quite well, and loves it when we prop him up on an exercise ball and bounce him. In fact, he loves moving so much that one of his therapists says his theme song is “I like to move it, move it.” Sol’s arm and leg muscles are becoming more tight as a result of the stroke, so we stretch him out every day. We are also working on encouraging Sol to keep his right hand open and use it to hold toys and grab his toes. While he isn’t grabbing his feet independently, if we stretch him so his feet dangle in front of his face, he’ll grab them and put them in his mouth. This is huge progress because it means Sol’s tight muscles are getting more limber!

Vision Therapy is slightly less intensive since it’s difficult to instruct Sol how to use his eyes and vision. Instead, our therapist observes him every two weeks and notes how much he’s improving every time, especially focusing on how attentive he is to surrounding toys and faces. We’re starting to see a remarkable improvement in his ability to keep his eyes in midline, and hope this continues to improve over the next few months.

The next major milestones we have in sight are sitting independently, pushing up from his tummy to his hands and knees, and rolling from his back to his tummy.

I Spy

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

IMG_1985

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!