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!

A Coffee Date

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Two little rascals

You know what happens when you have two babies under the age of 3? You drink all the coffee and don’t sleep a whole heck of a lot, let alone write blog posts.

I have had so much to say – so much has happened over the past couple of months – but at the end of the day once both babies are in bed, I struggle to get the words out of my head. Instead I usually let my brain ooze while I watch the Bachelorette and drink a glass of wine, promising myself that I will write that blog post tomorrow.

So, friends, grab your coffee (I’m already on my second cup while en route to a therapy appointment), and let’s have a coffee date – I’ll catch you up!

  • On May 24th, Solly and I completed our first round of hyperbaric oxygen therapy with our final, 40th dive. I found our entire experience of HBOT to be so positive and, most importantly, Solly had so many gains. You can read about experience with HBOT here and here.
  • The next day, we packed up our lives in South Carolina and – with the help of Nana and Papa – Solly, Bea, and I flew back to Nashville while Mike drove home with Solly’s equipment and our pups. Given all of Solly’s gains with speech during HBOT, our two short flights were wild with Solly laughs and squeals. You know when you fly, there is always that one child who is screaming during the entire flight? Yep. That was Solly! And, boy, are we sure happy that he’s that kid now!

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    Nana and a wild Solly on the airplane

  • Just one short week later, Mike and I packed up the babies once again and flew to Summit, New Jersey, where Solly had a consultation and surgery with Dr. Nuzzo. This one is hard to summarize, so I’m putting a separate post together to cover our experience. (Don’t worry. Even though it’s about the scary, seven letter “S” word, it ends on a positive note.)
  • Back home in Nashville, Solly participated in a weekend of Anat Baniel Method intensive lessons. We loved seeing some of our friends there – and even met some new ones – and, of course, spending time with our ABM practitioners Jan and Mary.

It’s been a whirlwind two months, but thankfully we are staying put in Nashville for awhile. We’re getting Solly set up in new therapies, reconnecting with some of his old (pre-HBOT) therapists, and ramping up for some intensive therapies to help make the most out of some of the gains we saw from HBOT and Solly’s new, looser legs.

Off I go to a new feeding therapy evaluation with Solly where I will likely fill up my coffee cup one more time. Life these days requires quite a bit of caffeine, but Solly and Bea sure make it all worth it!

 

Wrapping Up HBOT

When we first started hyperbaric oxygen therapy, the idea of doing 40 dives felt so daunting. Perhaps it was only because we could do one per day – or perhaps it was because the idea of being squeezed in a tube with a wiggly (and pinching, biting, and screaming) toddler was a bit too much. But when we packed up Solly and Bea to head to our 40th and final dive, I found myself already missing the very special one-on-one time I was able to have with Solly every day.

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Spending Mother’s Day with my boy

When I blogged about the gains we noticed after the first 20 dives, I mentioned that Solly was acting more like a 2 year old than he ever had before (hello, emotions!), he began making new sounds and even came close to using words, his normally tight limbs were becoming looser, and he had gotten strong enough to start bouncing when in a kneeling position.

With the second half of our treatment, we saw those gains continue to strengthen and grow. For example, in his new favorite bouncy move, he started to shift to almost walking on his knees, moving his legs reciprocally:

On top of those, we really saw him become more interactive with his surrounding environment. Instead of simply lying next to me and only playing with me or watching a show on the TV, he became more interested in sitting up and observing what was going on outside the chamber. He’d play peek-a-boo with the person in the chamber across from ours, mimic someone standing outside the chamber, or just be snoopy and watch what the technician was doing. It was really cool to see this awareness develop!

We’re excited to continue to watch Solly develop and grow as a result of HBOT, and we only hope that we can continue to build on these gains. But for now, it’s play time until we move onto the next big thing!

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Swinging in the park at Hilton Head Island

 

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:

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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.