Imagine being stuck in a glass tube for over an hour while unable to sit up straight and with no contact with the outside world. Now imagine you also have a wiggly 2 year old laying next to you and Sesame Street and Frozen are being played on repeat.
Welcome to my life.
While this may sound like a personal hell to some – and I must admit, it isn’t all fun and games – this exercise is an alternative therapy, officially called hyperbaric oxygen therapy (HBOT), that is very promising for Solly.
HBOT is what is typically used for divers suffering from the bends or, as has been highlighted in recent news, for concussions and other sports-related injuries. According to HBOT.com,
Hyperbaric oxygen therapy (HBOT) is a medical treatment which enhances the body’s natural healing process by inhalation of 100% oxygen in a total body chamber, where atmospheric pressure is increased and controlled.
It can do things like alleviate pain from Parkinson’s or rheumatoid arthritis, help restore hearing or vision, quickly heal wounds in war veterans, and more. For us, the idea is that Solly’s brain has damaged areas from the three strokes he had at birth. By flooding his body with oxygen, we hope to help heal these areas and allow his brain to create new connections.
I had first heard about HBOT early in the Fall of 2016, when I was about 4 months pregnant with Beatrix. We did some research into it and concluded that it would be worth our time and money to give it a try. Unfortunately, there are no HBOT centers in or near Nashville that will treat children. Because HBOT is not FDA-approved for cerebral palsy and Pediatric Stroke, not all HBOT centers will treat this population. Luckily for us, we found Hyperbaric Therapy of The Lowcountry, which is just a quick drive from my parents home on Hilton Head Island. This center has experience treating children with cerebral palsy – and they have seen great results in that population. So, at the beginning of April, we packed up our family and pups, put all of Solly’s traditional therapies on hold, and headed to HHI to begin treatment.
A typical course of treatment for children with CP is 40 “dives” – or one hour spent in the chamber, pumping 100% oxygen at 1.5 atmospheres of pressure. To avoid potential oxygen toxicity, it’s generally recommended to only do one dive per day, so we are calling HHI home for the next few weeks. Many parents I’ve spoken to who have done HBOT for their children have reported seeing improved vision, decreased spasticity, increased mobility, increased speech, and more. It generally takes a while to see results, however, we are now 11 dives into our treatment and have already noticed that Solly is babbling more, is looser in his legs (despite us weaning him off of Baclofen, his muscle relaxer, for non-related reasons), and is more engaged with his environment. For me, it’s one hour a day that I get to spend alone with my sweet boy (which rarely happens anymore)!
We hope this treatment will help him to continue to make gains, but if nothing else, it sure is nice to have some beach time in the evenings and enjoy our little family of four without our typical weekly schedule of endless therapy and doctors appointments.