Today’s blog post is part of a monthly feature called Mommy of A Miracle written by Kristin Olliney, our newest guest blogger and the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin discusses the importance of advocating for the survivor in your life. Read Isabella’s entire story on our website.
As a mother and sole caregiver to my daughter Isabella, I am also her biggest advocate. I am Isabella’s voice. Isabella’s journey has been a series of highs and lows. She and I are a team – I refuse to be a bystander. Isabella’s ongoing strength, courage and determination make me fight even harder for her.
This past summer, Isabella had really regressed (behaviorally, emotionally, psychiatrically, and cognitively). It was heart wrenching to watch. I turned to the Internet on a mission to find something that could help Isabella. She already had physical, occupational, speech, in-home behavioral and dog therapy, as well as many other providers involved. I was looking for something else to help her get back on track.
I came across an article about hyperbaric oxygen treatments (HBOT). HBOT is a medical treatment that puts the entire body under increased atmospheric pressure. The patient breathes 100 percent oxygen as opposed to the 20 percent we normally breathe. The higher amount of oxygen promotes blood oxygen flow to damaged tissue, reduces swelling and infection, preserves tissue and increases the healing of wounds. This form of treatment is commonly used to treat diabetics with wounds that aren’t healing, burn victims, cancer patients with damage from radiation treatment, etc. Recently, HBOT had been used to treat veterans with Traumatic Brain Injury. The results of the TBI study showed so much promise that I continued to research.
I couldn’t find any HBOT studies that involved children or anyone with an Acquired Brain Injury. I couldn’t stop thinking about the promise these studies had shown, so I talked with Isabella’s neurologist. We decided to try HBOT. I was thrilled at the possibilities that this treatment could offer, but I had realistic expectations. My hope was that if it helped with just one symptom then it was worth it.
On the day of the first treatment, Isabella and I went into the chamber with a nurse. Once the chamber reached the correct pressure, Isabella put on a hood and breathed in the higher oxygen for an hour. During treatment Isabella could play, talk, move around and even watch a movie. She tolerated HBOT very well with no adverse reactions. We went four times per week, an hour each time. Based on the few TBI case studies that were available, we decided to stop when we reached 40 treatments. There is no protocol for children or even adults with ABI.
The treatments helped Isabella in many ways. She started sleeping through the night which was something she hadn’t done before, and started showing sporadic compassion and empathy. Music (which had been a trigger since the brain injury) was now something Isabella not only tolerated but enjoyed. As we approached 40 treatments, she had her biggest breakthrough. She started remembering things about her life before. The memories were random and not something that we would ever talk about (i.e.: playing video games with my cousins on the day she got sick with acute encephalitis). The brain injury had severely impaired Isabella’s memory. She didn’t remember anything about the first four-and-a-half years of her life. The two years since the brain injury had become a blur. I immediately started advocating for more HBOT. We decided to continue with another 40 treatments as long as Isabella continued to improve, which she did.
When we reached 80 treatments, we decided to take a break to see how she did. After two weeks without HBOT, things were awful. Isabella was no longer sleeping through the night. She was waking up multiple times and was awake way too early. Her tics were worse and anxiety was increased. She was having trouble talking, her OCD was at its worst and she literally couldn’t sit still. Isabella would complain that she couldn’t make her “brain stop.” It was heartbreaking to watch.
HBOT had helped Isabella, but I had no idea how much until I was watching her slowly fall apart without it. I advocated for her to get back into treatment so she could be maintained (one to two times per week). Unfortunately, the insurance company didn’t feel the same way. I am appealing this decision. HBOT is not a treatment that she can have for life. However, there has to be a way to maintain Isabella. My hope is that someday HBOT will be available to all brain injury survivors.
Isabella’s brain injury requires a combination of many therapies, treatments, medication and a great team of medical professionals. It also requires that I be an active participant in Isabella’s care by advocating. I research, ask questions, talk with other families and won’t ever give up advocating for her. Advocating is an uphill battle but seeing improvements that I helped to accomplish makes it completely worthwhile. Whether you want the brain injury survivor in your life to have access to HBOT, another treatment you’ve researched, or new kind of medication, advocating for your loved one is absolutely one of the best things you can do for your loved one.