I’ve always considered myself to be a protective mother.
From the moment I had kids I understood why “Mama Bears” had the reputation they did. However, I was also soft. I was quiet and afraid to speak up for myself. I was naïve and way too trusting that others would automatically have my kid’s best interests in mind.
Even after both of our sons were diagnosed with Duchenne, I was incredibly trusting. I trusted doctors would have answers to all my questions. I assumed they would get back to me as soon as possible. I thought hospitals would know way more about Duchenne than I did. I expected a sense of urgency when dealing with medical professionals, but sadly that was not always the case.
Suddenly, I found myself fighting.
It felt like everything was a battle. Drug companies, insurance providers and even some doctors seemed content to brush us off or deny our boys the care they needed. I filled out mounds of paperwork, made dozens of phone calls and constantly had to follow up with people I assumed would get back to me in a hurry.
Something switched in me along this Duchenne journey and I got tired of apologizing for speaking up. I stopped caring about “inconveniencing” someone with my third phone call. I learned some sad lessons along the way about the medical field and honestly about the lack of empathy in our world. I started to realize that my knowledge of Duchenne was plenty adequate, so I started to trust my intuition.
To sum up – I became “Mama Bear.”
Now that I have a different perspective, I have different ways of advocating for the best care. My children come first, and if I have to make some noise for their care, I’m not afraid to do so. I am kind and professional, but I will call multiple times if things aren’t getting done. I will appeal as many times as it takes to get that approval we need. I will fight for my children at all costs.
I now know who is passionate about helping us and who isn’t. I’ve found amazing people to help us along the way. We’ve become close friends with various doctors, nurses and other parents throughout our five-year journey. From diagnosis day to now I’m a different mother. That timid little mama who was afraid to rock the boat is gone and my inner mama bear has turned me into an advocate.
Recently one of my sons has been having severe stomach issues. We mentioned it to one specialist who suggested it may be poor nutrition. That was not only wildly inaccurate, it was also insulting. Next, we went to our pediatrician who agreed something serious may be going on. She agreed to run some tests. When all tests (even food allergy tests) came back normal, aside from elevated liver enzymes which I convinced her were normal in Duchenne, she referred us to a GI specialist.
His symptoms continued to worsen and I continued to worry. No matter what he ate each day he kept vomiting. Always at night and almost every single night he would throw up. We tried nausea meds, cleanses, reflux meds and elimination diets. Nothing helped and the vomiting persisted.
Do you know what it’s like to run to your child’s room at midnight hoping to get there before he throws up on himself or chokes because he can no longer sit up on his own? There are no words to describe the feeling or the stress that comes to mind when I look back at that time.
This went on for months.
Then one day, I got sick of waiting around for the next test result. I needed to do more. After lunch one day, he said he felt dizzy so I took his blood sugar. It was super low! Since, our GI doc wasn’t convinced that his blood sugar was dropping since it was normal on her tests, I called our favorite doctor. From day one the boy’s cardiologist has always been so invested in their care and I knew he’d help us. He had us come right in for bloodwork. No appointment to wait for just come to my office now. I was relieved.
Once again everything came back normal, but after a conversation with my son’s infusion nurse and some things the cardiologist mentioned, we started to suspect Gastroparesis. We mentioned it to the GI doctor who said she’d look for that as well, but didn’t suspect that. “It’s rare,” she said. Let me just tell you that the word “rare” to a Duchenne mom is NOT reassuring to us anymore.
The GI specialist recommended more extensive tests. The first test was an upper GI endoscopy under anesthesia, looking back it upsets me that the first test they do is one that requires anesthesia! Next, they did a dye study where the hospital doctor reading the results to me said, “it looks like Gastroparesis. It can be more common in Duchenne.” I wanted to hug him. Finally! I had answers for the first time in months.
After multiple calls and messages to the GI doctor trying to find out what he should eat and what medication she would prescribe I started researching the condition myself. I came up with a diet based on my online research. I was elated when he didn’t throw up that night, or the next… or the next. It was working.
He was finally feeling better!
When I finally did hear back, the nurse at the GI doctor told me there was no need to change his diet and they would call in a gut motility medication. Thankfully, I didn’t listen to her and continued with his new diet. He was still symptom free, which I was grateful for, since the medication took about 10 days to actually get called in and ordered.
No one seemed to have any urgency at all. No one seemed to care that my child had been suffering for months. When I finally heard back from that same nurse about his prescription status, she told me to also look online for the recommended diet for Gastroparesis, but assured me the medication would be the most helpful. All I know, is that from day one of changing his diet he has felt better. That was two months ago and he hasn’t thrown up since.
This is just one example of what Duchenne moms go through all the time. Not only are we fighting with insurance companies, doctors and hospitals for the right care, we are also trying to keep up to date on future treatments and research about their disease. Sadly, sometimes the parents are more knowledgeable about Duchenne than the providers. I’ve encountered this scenario many times since our diagnosis five years ago and it upsets me.
So – the next time a doctor makes you feel bad for “overstepping,” stand firm. We know what’s best for our children. If your gut tells you something isn’t right, listen. If you have to find another doctor or another opinion, do it. Talk to other parents, sometimes their advice is the best advice. Of course, doctors will be correct sometimes, and many health care professionals care deeply about the work they do and their patients. However, it’s okay to do your own research too. I’ve learned that the only way to get the best care for my boys is to fight for it. I am no longer afraid to unleash my inner Mama Bear when I need to, sometimes it’s necessary to give our kids the care they deserve.