Stacy–How letting her hemophilia A diagnosed son be more active was a great benefit to her whole family
How was your son Alex diagnosed with hemophilia A?
When Alex was born, my husband and I had no idea of the challenges we would face in the future. Everything appeared normal for the first five years of Alex’s life. That is until he had a tonsillectomy. He was discharged from the hospital, but a week later, he started to throw up blood and blood clots. After two visits to the emergency room, Alex was still bleeding. His blood supply was so critically low he required a blood transfusion. Doctors diagnosed my bubbly five-year-old with severe hemophilia A. To say I was shocked would be an understatement. I was absolutely terrified. There is no history of bleeding disorders in my family, and I only realized later that I had missed a number of red flags throughout Alex’s first five years. He most certainly had symptoms of bleeds, but I didn’t know what I was looking at. I thought the bumps and bruises came with learning how to crawl, walk, and then run.
What went through your mind, having had no experience with hemophilia?
Those first few months after the diagnosis were really difficult. In the back of my mind, I thought Alex would be safer if I left him at the children’s hospital until he turned 18 because I had no idea how to care for him, and the last thing I wanted was to lose him. It was a process as my husband and I tried to understand life with hemophilia and learned how to meet Alex’s needs. But in the back of my mind, I believed that, once we adjusted to the learning curve, Alex would be okay. That didn’t stop me from having a really low moment when we went to a pool party, where I met a young man who had difficulty with hemophilia A over the course of his life. I became determined to seek out the best care for Alex.
“In the back of my mind, I believed that, once we adjusted to the learning curve, Alex would be okay.”
Not all activities are appropriate for all individuals. Please consult with your doctor prior to engaging in any activity.
What have you learned through this journey?
I talked about my hopes and fears with Alex’s doctor, and we agreed on a treatment plan. Initially, Alex was treated on-demand. Our doctor later made the decision to treat prophylactically. Always consult with your doctor to determine which treatment regimen is right for you or you child. I guess during that time I became a little bit over-protective. When he’d ride his bicycle, in addition to his helmet, I’d have him in knee pads and elbow pads. And then, one day when he was seven, I asked him why he didn’t want to go for a ride with his neighborhood friends. He explained to me if he bumped his knee, he might get a bleed, and if he got a bleed, then he’d have to have an infusion…which meant he’d have to get stuck with a needle. I was stunned. I realized I was making him afraid to participate in activities that his doctor had approved, and that if his joints were going to be strong as he grew up, he needed to be active. I began to let go of the reins just a little bit and let him venture out just that much further.
My husband and I decided we could all do non-competitive tae kwon do, which is a martial art. Our thinking was the stretching portion of the practice would benefit Alex by strengthening his joints. It may not be appropriate for everyone, so be sure to discuss any new exercise program with your doctor, first. Even Alex’s younger sister participates. After clearing the idea with Alex’s doctor who set up the parameters including, no competitions, of what he could and couldn’t do, we enrolled. Alex and his teacher agreed if he felt like he might be injured, or if he felt any kind of symptom, he would remove himself from the mat. Over the years, he’s followed that agreement to the letter. There’s no pressure for him to keep up with his peers, and he can work at his own pace. He’s learned how to safely stretch his muscles before beginning the sessions, and that’s something he can do for the rest of his life.
Alex, who is also an active member of the local boys chapter, has always been very responsible about self-infusing, and is always–true to the club’s motto–prepared. He learned how to self-infuse at hemophilia camp.
What did you think when you first heard about ADYNOVATE® [Antihemophilic Factor (Recombinant), PEGylated]?
During a visit with my doctor, the doctor explained that ADYNOVATE [Antihemophilic Factor (Recombinant)], is an injectable medicine that is used to help treat and control bleeding in children and adults with hemophilia A and that it can reduce the number of bleeding episodes when used regularly (prophylaxis). The doctor told us that you should not use ADYNOVATE if you are allergic to mice or hamster protein, or if you’re allergic to any ingredients in ADYNOVATE or ADVATE® [Antihemophilic Factor (Recombinant)]. We also talked about the twice-weekly dosing schedule and about the potential side effects such as headache and nausea.1
When we learned about ADYNOVATE, we were pretty excited about Alex having the potential to treat twice a week instead of every other day.1 The doctor prescribed an appropriate dosing schedule; my husband and I have to get him up about 5:15 AM so he can treat before his dad and I leave for work.
The product support we’ve received from Shire, has been great. They have a CoPay Assistance Program we qualified for. Also, having the opportunity to be True ID speakers has helped us connect with other families in the hemophilia community, and that’s a big plus for all of us.
Any final thoughts?
If I could give other parents of children with hemophilia A the benefit of my experience, I encourage you to find someone you can trust, and who is willing to learn how to care for your child for a short period of time so you can have a break. Everyone needs a little “me” time. And even though your child must wear protective gear, be careful not to make him or her afraid of participating in appropriate activities. Life’s a giant learning curve, but you can do it!